THE 2002 OFFICIAL PATIENT’S SOURCEBOOK
on
J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS
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ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2002 by ICON Group International, Inc. Copyright Ó2002 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1
Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher's note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The 2002 Official Patient’s Sourcebook on Lupus: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83378-8 1. Lupus-Popular works. I. Title.
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Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication.
Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail:
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Dedication To the healthcare professionals dedicating their time and efforts to the study of lupus.
Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to lupus. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support.
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About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications.
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About ICON Health Publications In addition to lupus, Official Patient’s Sourcebooks are available for the following related topics: ·
The Official Patient's Sourcebook on Arthritis of the Knee
·
The Official Patient's Sourcebook on Arthritis of the Shoulder
·
The Official Patient's Sourcebook on Ehlers-danlos Syndrome
·
The Official Patient's Sourcebook on Epidermolysis Bullosa
·
The Official Patient's Sourcebook on Fibromyalgia
·
The Official Patient's Sourcebook on Gout
·
The Official Patient's Sourcebook on Juvenile Rheumatoid Arthritis
·
The Official Patient's Sourcebook on Marfan Syndrome
·
The Official Patient's Sourcebook on Osteoarthritis
·
The Official Patient's Sourcebook on Osteogenesis Imperfecta
·
The Official Patient's Sourcebook on Polymyalgia Rheumatica
·
The Official Patient's Sourcebook on Raynaud's Phenomenon
·
The Official Patient's Sourcebook on Reiter's Syndrome
·
The Official Patient's Sourcebook on Rheumatoid Arthritis
·
The Official Patient's Sourcebook on Scleroderma
To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health
Contents vii
Table of Contents INTRODUCTION...................................................................................... 1
Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 4
PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON LUPUS: GUIDELINES ........................ 9
Overview............................................................................................................... 9 What Is Lupus? .................................................................................................. 10 Understanding What Causes Lupus .................................................................. 12 Symptoms of Lupus ............................................................................................ 13 Diagnosing Lupus .............................................................................................. 15 Treating Lupus ................................................................................................... 16 Lupus and Quality of Life................................................................................... 20 Tips for Working with Your Doctor ................................................................... 22 Pregnancy For Women With Lupus................................................................... 22 Current Research ................................................................................................ 23 Additional Resources .......................................................................................... 26 More Guideline Sources ..................................................................................... 28 Vocabulary Builder............................................................................................. 41
CHAPTER 2. SEEKING GUIDANCE ....................................................... 51
Overview............................................................................................................. 51 Associations and Lupus...................................................................................... 51 Finding More Associations................................................................................. 57 Finding Doctors.................................................................................................. 59 Finding a Rheumatologist .................................................................................. 60 Selecting Your Doctor ........................................................................................ 60 Working with Your Doctor ................................................................................ 61 Broader Health-Related Resources ..................................................................... 62 Vocabulary Builder............................................................................................. 63
CHAPTER 3. CLINICAL TRIALS AND LUPUS ........................................ 65
Overview............................................................................................................. 65 Recent Trials on Lupus....................................................................................... 68 Benefits and Risks............................................................................................... 92 Keeping Current on Clinical Trials.................................................................... 95 General References.............................................................................................. 96 Vocabulary Builder............................................................................................. 97
PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL................................................ 101
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CHAPTER 4. STUDIES ON LUPUS ....................................................... 103
Overview........................................................................................................... 103 The Combined Health Information Database ................................................... 103 Federally-Funded Research on Lupus .............................................................. 112 E-Journals: PubMed Central ............................................................................ 128 The National Library of Medicine: PubMed .................................................... 133 Vocabulary Builder........................................................................................... 140
CHAPTER 5. PATENTS ON LUPUS ...................................................... 147
Overview........................................................................................................... 147 Patents on Lupus .............................................................................................. 148 Patent Applications on Lupus .......................................................................... 164 Keeping Current ............................................................................................... 168 Vocabulary Builder........................................................................................... 169
CHAPTER 6. BOOKS ON LUPUS .......................................................... 173
Overview........................................................................................................... 173 Book Summaries: Federal Agencies .................................................................. 173 Book Summaries: Online Booksellers ............................................................... 181 The National Library of Medicine Book Index ................................................. 185 Chapters on Lupus............................................................................................ 188 Directories......................................................................................................... 192 General Home References ................................................................................. 194 Vocabulary Builder........................................................................................... 194
CHAPTER 7. MULTIMEDIA ON LUPUS ............................................... 199
Overview........................................................................................................... 199 Video Recordings .............................................................................................. 199 Bibliography: Multimedia on Lupus ................................................................ 201 Vocabulary Builder........................................................................................... 203
CHAPTER 8. PERIODICALS AND NEWS ON LUPUS ............................ 205
Overview........................................................................................................... 205 News Services & Press Releases ....................................................................... 205 Newsletters on Lupus ....................................................................................... 215 Newsletter Articles ........................................................................................... 216 Academic Periodicals covering Lupus .............................................................. 225 Vocabulary Builder........................................................................................... 227
CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 229
Overview........................................................................................................... 229 NIH Guidelines................................................................................................. 229 NIH Databases.................................................................................................. 230 Other Commercial Databases ........................................................................... 237 The Genome Project and Lupus........................................................................ 238 Specialized References....................................................................................... 242 Vocabulary Builder........................................................................................... 243
CHAPTER 10. DISSERTATIONS ON LUPUS ......................................... 245
Contents
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Overview........................................................................................................... 245 Dissertations on Lupus..................................................................................... 245 Keeping Current ............................................................................................... 247
PART III. APPENDICES .................................................. 249 APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 251
Overview........................................................................................................... 251 Your Medications: The Basics .......................................................................... 252 Learning More about Your Medications .......................................................... 253 Commercial Databases...................................................................................... 255 Contraindications and Interactions (Hidden Dangers) ................................... 259 A Final Warning .............................................................................................. 260 General References............................................................................................ 261 Vocabulary Builder........................................................................................... 262
APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 265
Overview........................................................................................................... 265 What Is CAM? ................................................................................................. 265 What Are the Domains of Alternative Medicine?............................................ 266 Can Alternatives Affect My Treatment? ......................................................... 269 Finding CAM References on Lupus ................................................................. 270 Additional Web Resources................................................................................ 280 General References............................................................................................ 289 Vocabulary Builder........................................................................................... 290
APPENDIX C. RESEARCHING NUTRITION ......................................... 293
Overview........................................................................................................... 293 Food and Nutrition: General Principles........................................................... 294 Finding Studies on Lupus ................................................................................ 298 Federal Resources on Nutrition........................................................................ 302 Additional Web Resources................................................................................ 303 Vocabulary Builder........................................................................................... 307
APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 309
Overview........................................................................................................... 309 Preparation ....................................................................................................... 309 Finding a Local Medical Library ...................................................................... 310 Medical Libraries Open to the Public............................................................... 310
APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 317
Overview........................................................................................................... 317 Your Rights as a Patient................................................................................... 317 Patient Responsibilities .................................................................................... 321 Choosing an Insurance Plan............................................................................. 322 Medicare and Medicaid .................................................................................... 324 NORD’s Medication Assistance Programs ..................................................... 327 Additional Resources ........................................................................................ 328
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Contents
APPENDIX F. NEUROLOGICAL SEQUELAE OF LUPUS........................ 329
Overview........................................................................................................... 329 Is There Any Treatment? ................................................................................. 329 What Is the Prognosis?..................................................................................... 330 What Research Is Being Done? ........................................................................ 330 For More Information....................................................................................... 330 Vocabulary Builder........................................................................................... 331
ONLINE GLOSSARIES.................................................... 332 Online Dictionary Directories.......................................................................... 338
LUPUS GLOSSARY........................................................... 339 General Dictionaries and Glossaries ................................................................ 368
INDEX................................................................................... 370
Introduction
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INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don't know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3
Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2
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Lupus
Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The 2002 Official Patient’s Sourcebook on Lupus has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to lupus, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on lupus. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on lupus should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate options is always up to the patient in consultation with their physician and healthcare providers.
Introduction
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Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching lupus (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to lupus. It also gives you sources of information that can help you find a doctor in your local area specializing in treating lupus. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with lupus. Part II moves on to advanced research dedicated to lupus. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on lupus. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with lupus or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with lupus. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with lupus.
Scope While this sourcebook covers lupus, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that lupus is often considered a synonym or a condition closely related to the following: ·
Chronic Cutaneous Lupus Erythematosus
·
Disseminated Lupus Erythematosus
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Focal Glomerulonephritis
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Lupus Erythematosus
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Lupus Glomerular Disease
·
Lupus Glomerulonephritis
·
Lupus Nephritis
4
Lupus
In addition to synonyms and related conditions, physicians may refer to lupus using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world's illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for lupus:4 ·
695.4 lupus erythematosus
·
710.0 systemic lupus erythematosus
For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to lupus. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.
Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson's approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with lupus will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with lupus is even indexed in 4 This list is based on the official version of the World Health Organization's 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”
Introduction
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search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of lupus, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors
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PART I: THE ESSENTIALS
ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on lupus. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of lupus to you or even given you a pamphlet or brochure describing lupus. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding.
Guidelines
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CHAPTER 1. THE ESSENTIALS ON LUPUS: GUIDELINES Overview Official agencies, as well as federally-funded institutions supported by national grants, frequently publish a variety of guidelines on lupus. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on lupus can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internetbased services that post them.
The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on lupus. Originally founded in 1887, the NIH is one of the world's foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world's most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine.
5
Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html.
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There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with lupus and associated conditions: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
·
National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc. ) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html
·
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); fact sheets and guidelines at http://www.nih.gov/niams/healthinfo/
Among those listed above, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is especially noteworthy. The mission of NIAMS, a part of the National Institutes of Health (NIH), is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases. The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. The NIAMS provides the following guideline concerning lupus.6
What Is Lupus?7 Lupus is a disorder of the immune system known as an autoimmune disease. In autoimmune diseases, the body harms its own healthy cells and tissues. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include 6 This and other passages are adapted from the NIH and NIAMS (http://www.niams.nih.gov/hi/index.htm). “Adapted” signifies that the text is reproduced with attribution, with some or no editorial adjustments. 7 Adapted from The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): http://www.niams.nih.gov/hi/topics/lupus/slehandout/index.htm.
Guidelines 11
extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems. At present, there is no cure for lupus. However, lupus can be very successfully treated with appropriate drugs, and most people with the disease can lead active, healthy lives. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission. Understanding how to prevent flares and how to treat them when they do occur helps people with lupus maintain better health. Intense research is underway and scientists funded by the NIH are continuing to make great strides in understanding the disease, which may ultimately lead to a cure. Two of the questions researchers are studying are who gets lupus and why. We know that many more women than men have lupus. Lupus is three times more common in African American women than in Caucasian women and is also more common in women of Hispanic, Asian, and Native American descent. In addition, lupus can run in families, but the risk that a child or a brother or sister of a patient will also have lupus is still quite low. It is difficult to estimate how many people in the United States have the disease because its symptoms vary widely and its onset is often hard to pinpoint. Although “lupus” is used as a broad term, there actually are several kinds of lupus: ·
Systemic lupus erythematosus (SLE) is the form of the disease that most people are referring to when they say “lupus.” The word “systemic” means the disease can affect many parts of the body. The symptoms of SLE may be mild or serious. Although SLE usually first affects people between the ages of 15 and 45 years, it can occur in childhood or later in life as well. This booklet focuses on SLE.
·
Discoid lupus erythematosus refers to a skin disorder in which a red, raised rash appears on the face, scalp, or elsewhere. The raised areas may become thick and scaly and may cause scarring. The rash may last for days or years and may recur. A small percentage of people with discoid lupus have or develop SLE.
·
Drug-induced lupus refers to a form of lupus caused by specific medications. Symptoms are similar to those of SLE (arthritis, rash, fever, and chest pain) that typically go away when the drug is stopped.
·
Neonatal lupus is a rare form of lupus affecting newborn babies of women with SLE or certain other immune system disorders. At birth, the babies have a skin rash, liver abnormalities, or low blood counts, which
12 Lupus
entirely go away over several months. However, babies with neonatal lupus may have a serious heart defect. Physicians can now identify most at-risk mothers, allowing for prompt treatment of the infant at or before birth. Neonatal lupus is very rare, and most infants of mothers with SLE are entirely healthy.
Understanding What Causes Lupus Lupus is a complex disease whose cause is unknown. It is likely that there is no single cause but rather a combination of genetic, environmental, and possibly hormonal factors that work together to cause the disease. The exact cause may differ from one person to another. Scientists are making progress in understanding the processes leading to lupus, as described here and in the Current Research section. Research suggests that genetics plays an important role; however, no specific “lupus gene” has been identified. Instead, it appears that several genes may increase a person's susceptibility to the disease. The fact that lupus can run in families indicates that its development has a genetic basis. In addition, studies of identical twins have shown that lupus is much more likely to affect both members of a pair of identical twins, who share the exact same set of genes, than two nonidentical twins or other siblings. However, scientists think that genes alone cannot account for who gets lupus. Other factors must also play a role. Some of the factors that scientists are studying include sunlight, stress, certain drugs, and infectious agents such as viruses. Even though a virus might trigger the disease in susceptible individuals, a person cannot “catch” lupus from someone else. In lupus, the body's immune system does not work as it should. A healthy immune system produces substances called antibodies that help fight and destroy viruses, bacteria, and other foreign substances that invade the body. In lupus, the immune system produces antibodies against the body’s healthy cells and tissues. These antibodies, called autoantibodies (“auto” means self), contribute to the inflammation of various parts of the body, causing damage and altering the function of target organs and tissues. In addition, some autoantibodies join with substances from the body’s own cells or tissues to form molecules called immune complexes. A buildup of these immune complexes in the body also contributes to inflammation and tissue injury in people with lupus. Researchers do not yet understand all of the factors that cause inflammation and tissue damage in lupus, and this is an active area of research.
Guidelines 13
Symptoms of Lupus Each person’s experience with lupus is different, although there are patterns that permit accurate diagnosis. Symptoms can range from mild to severe and may come and go over time. Common symptoms of lupus include painful or swollen joints, unexplained fever, and skin rashes, along with extreme fatigue. A characteristic skin rash may appear across the nose and cheeks-the so-called butterfly or malar rash. Other rashes occur elsewhere on the face and ears, upper arms, shoulders, chest, and hands. Other symptoms of lupus include chest pain, hair loss, sensitivity to the sun, anemia (a decrease in red blood cells), and pale or purple fingers and toes from cold and stress. Some people also experience headaches, dizziness, depression, or seizures. New symptoms may continue to appear years after the initial diagnosis, and different symptoms can occur at different times. Common symptoms of lupus include: ·
Painful or swollen joints and muscle pain
·
Unexplained fever
·
Red rashes, most commonly on the face.
·
Chest pain upon deep breathing
·
Unusual loss of hair
·
Pale or purple fingers or toes from cold or stress (Raynaud's phenomenon)
·
Sensitivity to the sun
·
Swelling (edema) in legs or around eyes
·
Swollen glands
·
Extreme fatigue
In some people with lupus, only one system of the body such as the skin or joints is affected. Other people experience symptoms in many parts of their body. Just how seriously a body system is affected also varies from person to person. Most commonly, joints and muscles are affected, causing arthritis and muscle pain. Skin rashes are quite common. The following systems in the body also can be affected by lupus.
14 Lupus
Kidneys Inflammation of the kidneys (nephritis) can impair their ability to get rid of waste products and other toxins from the body effectively. Because the kidneys are so important to overall health, lupus affecting the kidneys generally requires intensive drug treatment to prevent permanent damage. There is usually no pain associated with kidney involvement, although some patients may notice that their ankles swell. Most often the only indication of kidney disease is an abnormal urine or blood test.
Lungs Some people with lupus develop pleuritis, an inflammation of the lining of the chest cavity that causes chest pain, particularly with breathing. Patients with lupus also may get pneumonia. Central Nervous System In some patients, lupus affects the brain or central nervous system. This can cause headaches, dizziness, memory disturbances, vision problems, stroke, or changes in behavior.
Blood Vessels Blood vessels may become inflamed (vasculitis), affecting the way blood circulates through the body. The inflammation may be mild and may not require treatment or may be severe and require immediate attention.
Blood People with lupus may develop anemia, leukopenia (a decreased number of white blood cells), or a decrease in the number of platelets (thrombocytopenia). Some people with lupus may have abnormalities that cause an increased risk for blood clots.
Guidelines 15
Heart In some people with lupus, inflammation can occur in the heart itself (myocarditis and endocarditis) or the membrane that surrounds it (pericarditis), causing chest pains or other symptoms. Lupus can also increase the risk of atherosclerosis.
Diagnosing Lupus Diagnosing lupus can be difficult. It may take months or even years for doctors to piece together the symptoms to diagnose this complex disease accurately. Making a correct diagnosis of lupus requires knowledge and awareness on the part of the doctor and good communication on the part of the patient. Giving the doctor a complete, accurate medical history (for example, what health problems you have had and for how long) is critical to the process of diagnosis. This information, along with a physical examination and the results of laboratory tests, helps the doctor consider other diseases that may mimic lupus, or determine if the patient truly has the disease. Reaching a diagnosis may take time and occur gradually as new symptoms appear. No single test can determine whether a person has lupus, but several laboratory tests may help the doctor to make a diagnosis. The most useful tests identify certain autoantibodies often present in the blood of people with lupus. For example, the antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against components of the nucleus, or “command center,” of the patient’s own cells. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA besides lupus, including infections, other rheumatic or immune diseases, and occasionally as a finding in normal healthy adults. The ANA test simply provides another clue for the doctor to consider in making a diagnosis. In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, antiRNP, anti-Ro (SSA), and anti-La (SSB). The doctor may use these antibody tests to help make a diagnosis of lupus. Some tests are used less frequently but may be helpful if the cause of a person’s symptoms remains unclear. The doctor may order a biopsy of the skin or kidneys if those body systems are affected. Some doctors may order a syphilis test or a test for anticardiolipin antibody. A positive test does not
16 Lupus
mean that a patient has syphilis; however, the presence of this antibody may increase the risk of blood clotting and can increase the risk of miscarriages in pregnant women with lupus. Again, all these tests merely serve as tools to give the doctor clues and information in making a diagnosis. The doctor will look at the entire picture--medical history, symptoms, and test results--to determine if a person has lupus. Other laboratory tests are used to monitor the progress of the disease once it has been diagnosed. A complete blood count, urinalysis, blood chemistries, and erythrocyte sedimentation rate (ESR) test can provide valuable information. Another common test measures the blood level of a group of substances called complement. People with lupus often have increased ESRs and low complement levels, especially during flares of the disease. Diagnostic tools used for diagnosing lupus: ·
Medical history
·
Complete physical examination
·
Laboratory tests:
·
Complete blood count
·
Erythrocyte sedimentation rate (ESR)
·
Urinalysis
·
Blood chemistries
·
Complement levels
·
Antinuclear antibody test (ANA)
·
Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti- La [SSB])
·
Syphilis test or anticardiolipin antibody
·
Skin or kidney biopsy
Treating Lupus Diagnosing and treating lupus is often a team effort between the patient and several types of health care professionals. A person with lupus can go to his or her family doctor or internist, or can visit a rheumatologist. A rheumatologist is a doctor who specializes in rheumatic diseases (arthritis and other diseases of the joints, bones, and muscles). Clinical immunologists
Guidelines 17
(doctors specializing in immune system disorders) may also treat people with lupus. As treatment progresses, other professionals often help. These may include nurses, psychologists, social workers, and specialists such as nephrologists (doctors who treat kidney disease), hematologists (doctors specializing in blood disorders), dermatologists (doctors who treat skin disease), and neurologists (doctors specializing in disorders of the nervous system). The range and effectiveness of treatments for lupus have increased dramatically, giving doctors more choices in how to treat the disease. It is important for the patient to work closely with the doctor and take an active role in treatment. Once lupus has been diagnosed, the doctor will develop a treatment plan based on the patient’s age, sex, health, symptoms, and lifestyle. Treatment plans are tailored to the individual’s needs and may change over time. In developing a treatment plan, the doctor has several goals: to prevent flares, to treat them when they do occur, and to minimize organ damage and complications. The doctor and patient should reevaluate the plan regularly to ensure that it is as effective as possible. Several types of drugs are used to treat lupus. The treatment the doctor chooses is based on the patient’s individual symptoms and needs. For people with joint or chest pain or fever, drugs that decrease inflammation, referred to as nonsteroidal anti-inflammatory drugs (NSAIDs), are often used. While some NSAIDs are available over the counter, a doctor’s prescription is necessary for others. NSAIDs may be used alone or in combination with other types of drugs to control pain, swelling, and fever. Even though some NSAIDs may be purchased without a prescription, it is important that they be taken under a doctor’s direction. Common side effects of NSAIDs, including those available over the counter, can include stomach upset, heartburn, diarrhea, and fluid retention. Some patients with lupus also develop liver and kidney inflammation while taking NSAIDs, making it especially important to stay in close contact with the doctor while taking these medications. A new class of anti-inflammatory drugs called COX-2 inhibitors (celecoxib [Celebrex]; rofecoxib [Vioxx]; mobic [Meloxicam]) have all of the same effects as NSAIDs on pain and inflammation but have a much lower risk of significant gastrointestinal side effects. These agents have not been extensively studied in patients with lupus and have not been approved by the Food and Drug Administration for use specifically in lupus. However, they might provide benefits similar to NSAIDs.
18 Lupus
NSAIDs Used to Treat Lupus8 Generic Name Ibuprofen Naproxen Sulindac Diclofenac Piroxicam Ketoprofen Diflunisal Nabumetone Etodolac Oxaprozin Indomethacin
Brand Name Motrin, Advil Naprosyn, Aleve Clinoril Voltaren Feldene Orudis Dolobid Relafen Lodine Daypro Indocin
Antimalarials Antimalarials are another type of drug commonly used to treat lupus. These drugs were originally used to treat malaria, but doctors have found that they also are useful for lupus. Exactly how antimalarials work in lupus is unclear, but scientists think that they may work by suppressing parts of the immune response. A common antimalarial used to treat lupus is hydroxychloroquine (Plaquenil). It may be used alone or in combination with other drugs and generally is used to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. Clinical studies have found that continuous treatment with antimalarials may prevent flares from recurring. Side effects of antimalarials can include stomach upset and, extremely rarely, damage to the retina of the eye. Corticosteroids The mainstay of lupus treatment involves the use of corticosteroid hormones, such as prednisone (Deltasone), hydrocortisone, methylprednisolone (Medrol), and dexamethasone (Decadron, Hexadrol). Corticosteroids are related to cortisol, which is a natural anti-inflammatory Brand names included in this publication are provided as examples only and their inclusion does not mean that these products are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular brand name is not mentioned, this does not mean or imply that the product is unsatisfactory. 8
Guidelines 19
hormone. They work by rapidly suppressing inflammation. Corticosteroids can be given by mouth, in creams applied to the skin, or by injection. Because they are potent drugs, the doctor will seek the lowest dose with the greatest benefit. Short-term side effects of corticosteroids include swelling, increased appetite, weight gain, and emotional ups and downs. These side effects generally stop when the drug is stopped. It can be dangerous to stop taking corticosteroids suddenly, so it is very important that the doctor and patient work together in changing the corticosteroid dose. Sometimes doctors give very large amounts of corticosteroid by vein over a brief period of time (days) (“bolus” or “pulse” therapy). With this treatment, the typical side effects are less likely and slow withdrawal is unnecessary. Long-term side effects of corticosteroids can include stretch marks on the skin, excessive hair growth, weakened or damaged bones (osteoporosis and osteonecrosis), high blood pressure, damage to the arteries, high blood sugar, infections, and cataracts. Typically, the higher the dose of prolonged corticosteroids, the more severe the side effects. Also, the longer they are taken, the greater the risk of side effects. Researchers are working to develop alternative strategies to limit or offset the use of corticosteroids. For example, corticosteroids may be used in combination with other, less potent drugs, or the doctor may try to slowly decrease the dose once the disease is under control. People with lupus who are using corticosteroids should talk to their doctors about taking supplemental calcium and vitamin D or other drugs to reduce the risk of osteoporosis (weakened, fragile bones). In special circumstances, patients may require stronger drugs to combat lupus symptoms. In some patients, methotrexate (Folex, Mexate, Rheumatrex) may be used to help control the disease. Patients who have many body systems affected by the disease may receive intravenous gamma globulin (Gammagard S/D), a blood protein that increases immunity and helps fight infection. Gamma globulin also may be used to control acute bleeding in patients with thrombocytopenia or to prepare a person with lupus for surgery. For patients whose kidneys or central nervous systems are affected by lupus, a type of drug called an immunosuppressive may be used. Immunosuppressives, such as azathioprine (Imuran) and cyclophosphamide (Cytoxan), restrain the overactive immune system by blocking the production of some immune cells and curbing the action of others. These drugs may be given by mouth or by infusion (dripping the drug into the vein through a small tube). Side effects may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The risk for side effects increases with the length of treatment. As
20 Lupus
with other treatments for lupus, there is a risk of relapse after the immunosuppressives have been stopped.
Side Effects Working closely with the doctor helps ensure that treatments for lupus are as successful as possible. Because some treatments may cause harmful side effects, it is important to report any new symptoms to the doctor promptly. It is also important not to stop or change treatments without talking to the doctor first.
Alternative Therapies Because of the nature and cost of the medications used to treat lupus, their potentially serious side effects, and the lack of a cure, many patients seek other ways of treating the disease. Some alternative approaches that have been suggested include special diets, nutritional supplements, fish oils, ointments and creams, chiropractic treatment, and homeopathy. Although these methods may not be harmful in and of themselves, and they may be associated with symptomatic or psychosocial benefit, no research to date shows that they affect the disease process or prevent organ damage. Some alternative or complementary approaches may help the patient cope or reduce some of the stress associated with living with a chronic illness. If the doctor feels the approach has value and will not be harmful, it can be incorporated into the patient’s treatment plan. However, it is important not to neglect regular health care or treatment of serious symptoms. An open dialogue between the patient and the physician about the relative values of complementary and alternative and more traditional therapy is essential in permitting the patient to make an informed choice about treatment options.
Lupus and Quality of Life Despite the symptoms of lupus and the potential side effects of treatment, people with lupus can maintain a high quality of life overall. One key to managing lupus is to understand the disease and its impact. Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity. Many people with lupus experience increased fatigue, pain, a rash, fever, abdominal discomfort, headache, or dizziness just before a flare. Developing strategies to prevent flares can also be helpful,
Guidelines 21
such as learning to recognize your warning signals and maintaining good communication with your doctor. It is also important for people with lupus to receive regular health care, instead of seeking help only when symptoms worsen. Having a medical exam and laboratory work on a regular basis allows the doctor to note any changes and may help predict flares. The treatment plan, which is tailored to the individual's specific needs and circumstances, can be adjusted accordingly. If new symptoms are identified early, treatments may be more effective. Other concerns also can be addressed at regular checkups. The doctor can provide guidance about such issues as the use of sunscreens, stress reduction, and the importance of structured exercise and rest, as well as birth control and family planning. Because people with lupus can be more susceptible to infections, the doctor may recommend yearly influenza vaccinations or pneumococcal vaccination for some patients. Warning signs of a flare-up: ·
Increased fatigue
·
Pain
·
Rash
·
Fever
·
Abdominal discomfort
·
Headache
· Dizziness Preventing a flare: ·
Learn to recognize your warning signals
·
Maintain good communication with your doctor
People with lupus should receive regular preventive health care, such as gynecological and breast examinations. Regular dental care will help avoid potentially dangerous infections. If a person is taking corticosteroids or antimalarial medications, a yearly eye exam should be done to screen for and treat eye problems. Staying healthy requires extra effort and care for people with lupus, so it becomes especially important to develop strategies for maintaining wellness. Wellness involves close attention to the body, mind, and spirit. One of the primary goals of wellness for people with lupus is coping with the stress of having a chronic disorder. Effective stress management varies from person
22 Lupus
to person. Some approaches that may help include exercise, relaxation techniques such as meditation, and setting priorities for spending time and energy. Developing and maintaining a good support system is also important. A support system may include family, friends, medical professionals, community organizations, and organized support groups. Participating in a support group can provide emotional help, boost self-esteem and morale, and help develop or improve coping skills. (For more information on support groups, see the Additional Resources section). Learning more about lupus may also help. Studies have shown that patients who are well informed and participate actively in their own care experience less pain, make fewer visits to the doctor, build self-confidence, and remain more active.
Tips for Working with Your Doctor ·
Seek a health care provider who will listen to and address your concerns.
·
Provide complete, accurate medical information.
·
Make a list of your questions and concerns in advance.
·
Be honest and share your point of view with the health care provider.
·
Ask for clarification or further explanation if you need it.
·
Talk to other members of the health care team, such as nurses, therapists, or pharmacists.
·
Do not hesitate to discuss sensitive subjects (for example, birth control, intimacy) with your doctor.
·
Discuss any treatment changes with your doctor before making them.
Pregnancy For Women With Lupus Although a lupus pregnancy is considered high risk, most women with lupus carry their babies safely to the end of their pregnancy. Experts disagree on the exact numbers, but 20 to 25 percent of lupus pregnancies end in miscarriage, compared to 10 to 15 percent of pregnancies in women without the disease. Pregnancy counseling and planning before pregnancy are important. Ideally, a woman should have no signs or symptoms of lupus
Guidelines 23
and be taking no medications for at least 6 months before she becomes pregnant. Some women may experience a mild to moderate flare during or after their pregnancy; others do not. Pregnant women with lupus, especially those taking corticosteroids, also are more likely to develop high blood pressure, diabetes, hyperglycemia (high blood sugar), and kidney complications, so regular care and good nutrition during pregnancy are essential. It is also advisable to have access to a neonatal (newborn) intensive care unit at the time of delivery in case the baby requires special medical attention. About 25 percent (one in four) of babies of women with lupus are born prematurely, but do not suffer from birth defects.
Current Research Lupus is the focus of intense research as scientists try to determine what causes the disease and how it can best be treated. Some of the questions they are working to answer include: Exactly who gets lupus, and why? Why are women more likely than men to have the disease? Why are there more cases of lupus in some racial and ethnic groups? What goes wrong in the immune system, and why? How can we correct the way the immune system functions once something goes wrong? What treatment approaches will work best to lessen or cure lupus symptoms? To help answer these questions, scientists are developing new and better ways to study the disease. They are doing laboratory studies that compare various aspects of the immune systems of people with lupus with those of other people both with and without lupus. They also use mice with disorders resembling lupus to better understand the abnormalities of the immune system that occur in lupus and to identify possible new therapies. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a component of the National Institutes of Health (NIH), has a major program of lupus research in its intramural program in Bethesda, Maryland, and funds many individual researchers across the United States who are studying lupus. To help scientists gain new knowledge, the NIAMS also has established Specialized Centers of Research devoted specifically to lupus research. In addition, the NIAMS is funding several lupus registries that will gather medical information as well as blood and tissue samples from patients and their relatives. This will give researchers across the
24 Lupus
country access to information and materials they can use to help identify genes that determine susceptibility to the disease. Identifying genes that play a role in the development of lupus is an active area of research. For example, researchers suspect a genetic defect in a cellular process called apoptosis, or “programmed cell death,” in people with lupus. Apoptosis is similar to the process that causes leaves to turn color in autumn and fall from trees; it allows the body to eliminate cells that have fulfilled their function and typically need to be replaced. If there is a problem in the apoptosis process, harmful cells may stay around and do damage to the body’s own tissues. For example, in a mutant mouse strain that develops a lupus-like illness, one of the genes that controls apoptosis is defective. When it is replaced by a normal gene, the mice no longer develop signs of the disease. Scientists are studying what role genes involved in apoptosis may play in human disease development. Studying genes for complement, a series of proteins in the blood that play an important part in the immune system, is another active area of lupus research. Complement acts as a backup for antibodies, helping them destroy foreign substances that invade the body. If there is a decrease in complement, the body is less able to fight or destroy foreign substances. If these substances are not removed from the body, the immune system may become overactive and begin to make autoantibodies. Recent large studies of families with lupus have identified a number of genetic regions that appear to confer risk of SLE. Although the specific genes and their function remain unknown, intensive work in delineating the entire human genome offers promise that these genes will be identified in the near future. This should provide knowledge of the fundamental nature of the risk factors that can lead to lupus and new insights into how these risks can be modified. It is thought that autoimmune diseases, such as lupus, occur when a genetically susceptible individual encounters an unknown environmental agent or trigger. In this circumstance, an abnormal immune response can be initiated that leads to the signs and symptoms of lupus. Research has focused on both the genetic susceptibility and the environmental trigger. Although the environmental trigger remains unknown, microbial agents such as Epstein-Barr virus and others have been considered. Researchers also are studying other factors that may affect a person’s susceptibility to lupus. For example, because lupus is more common in women than in men, some researchers are investigating the role of hormones and other male-female differences in the development and course of the disease.
Guidelines 25
A current study funded by the NIH is focusing on the safety and effectiveness of oral contraceptives (birth-control pills) and hormone replacement therapy in women with lupus. Doctors have worried about the wisdom of prescribing oral contraceptives or estrogen replacement therapy for women with lupus because of a widely held view that estrogens can make the disease worse. However, recent limited data suggest these drugs may be safe for some women with lupus. Researchers hope this study will yield options for safe, effective methods of birth control for young women with lupus and enable postmenopausal women with lupus to benefit from estrogen replacement therapy. Promising areas of research: ·
Identifying lupus susceptibility genes
·
Searching for environmental agents that cause lupus
·
Developing drugs or biologic agents that cure lupus
Researchers are also focusing on finding better treatments for lupus. A primary goal of this research is to develop treatments that can effectively minimize the use of corticosteroids. Scientists are trying to identify combination therapies that may be more effective than single-treatment approaches. Researchers are also interested in using male hormones, called androgens, as a possible treatment for the disease. Another goal is to improve the treatment and management of lupus in the kidneys and central nervous system. For example, a 20-year study supported by the NIAMS and the NIH found that combining cyclophosphamide with prednisone helped delay or prevent kidney failure, a serious complication of lupus. On the basis of new information about the disease process, scientists are using novel “biologic agents” to selectively block parts of the immune system. Development and testing of these new drugs, which are based on compounds that occur naturally in the body, comprise an exciting and promising new area of lupus research. The hope is that these treatments not only will be effective, but also will have fewer side effects. Other treatment options currently being explored include reconstructing the immune system by bone marrow transplantation. In the future, gene therapy also may play an important role in lupus treatment.
Hope for the Future With research advances and a better understanding of lupus, the prognosis for people with lupus today is far brighter than it was even 20 years ago. It is
26 Lupus
possible to have lupus and remain active and involved with life, family, and work. As current research efforts unfold, there is continued hope for new treatments; improvements in quality of life; and, ultimately, a way to prevent or cure the disease. The research efforts of today may yield the answers of tomorrow, as scientists continue to unravel the mysteries of lupus.
Additional Resources For more information on lupus, contact: National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse NIAMS/National Institutes of Health 1 AMS Circle Bethesda, MD 20892-3675 (301) 495-4484 or (877) 22-NIAMS (toll free) TTY: (301) 565-2966 Fax: (301) 718-6366 http://www.niams.nih.gov/ The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. The clearinghouse provides information on lupus. Fact sheets, additional information, and research updates can also be found on the NIAMS Web site at http://www.niams.nih.gov/. Association of Rheumatology Health Professionals, American College of Rheumatology 1800 Century Place, Suite 250 Atlanta, GA 30345 (404) 633-3777 Fax: (404) 633-1870 http://www.rheumatology.org/ The American College of Rheumatology (ACR) is an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints, and muscles. The Association of Rheumatology Health Professionals, a division of ACR, aims to enhance the knowledge and skills of rheumatology health professionals and to promote their involvement in rheumatology research, education, and quality patient care. The association also works to advance and promote basic and continuing education in rheumatology for health professionals who provide care to people with rheumatic diseases.
Guidelines 27
Lupus Foundation of America (LFA), Inc. 1300 Piccard Drive, Suite 200 Rockville, MD 20850 (301) 670-9292 (800) 558-0121 or your local chapter, listed in the telephone directory http://www.lupus.org/ This is the main voluntary organization devoted to lupus. The LFA assists local chapters in providing services to people with lupus, works to educate the public about lupus, and supports lupus research. Through a network of more than 500 branches and support groups, the chapters provide education through information and referral services, health fairs, newsletters, publications, and seminars. Chapters provide support to people with lupus, their families, and friends through support group meetings, hospital visits, and telephone help lines. SLE Foundation, Inc. 149 Madison Avenue, Suite 205 New York, NY 10016 (212) 685-4118 http://www.lupusny.org/ The foundation supports and encourages medical research to find the cause and cure of lupus and improve its diagnosis and treatment. It also provides a wide variety of services to help patients with lupus and their families. In addition, this voluntary organization conducts a broad-based public education program to raise awareness of lupus and increase understanding of this serious, chronic, autoimmune disease. Arthritis Foundation 1330 West Peachtree Street Atlanta, GA 30309 (404) 872-7100 (800) 283-7800, or call your local chapter (listed in the telephone directory) http://www.arthritis.org/ The Arthritis Foundation is the major voluntary organization devoted to supporting arthritis research and providing educational and other services to individuals with arthritis. It publishes free pamphlets and a magazine for members on all types of arthritis. It also provides up-todate information on research and treatment, nutrition, alternative therapies, and self-management strategies. Chapters nationwide offer exercise programs, classes, support groups, physician referral services, and free literature. For more information, call your local chapter, listed in
28 Lupus
the white pages of the phone book, or contact the Arthritis Foundation at the above address. Alliance for Lupus Research, Inc. 1270 Avenue of the Americas, Suite 609 New York, NY 10020 (212) 218-2840 The Alliance for Lupus Research, Inc. (ALR), is a nonprofit organization devoted exclusively to the support of promising research for the prevention, treatment, and cure of lupus. Through accelerated, focused, goal-oriented research programs, the ALR aims to promote basic and clinical sciences to achieve major advances leading to a better understanding of the cause of lupus.
More Guideline Sources The guideline above on lupus is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to lupus. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with lupus. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.
Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patientoriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is
Guidelines 29
similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.
The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on lupus and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: ·
Steroids in the Treatment of Lupus Source: Rockville, MD: Lupus Foundation of America. 1999. 6 p. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus related brochures for $3.95 plus shipping and handling. Summary: This pamphlet provides people who have lupus with information on using steroids to treat the symptoms resulting from inflammation in various tissues. People should take the lowest possible effective dose of steroids and should never suddenly stop taking them after more than 4 weeks. Cortisone, which is manufactured by the body's adrenal glands and is also made synthetically, has been found to reduce inflammation. Steroids produced by the outer part of the adrenal gland are called corticosteroids. Prednisone is the synthetic corticosteroid most often used to treat lupus. The pamphlet discusses dosage, mode of administration, and common side effects, such as a change in appearance, psychological effects, and an increase in susceptibility to infections. In addition, side effects of long-term use include avascular necrosis of bone, osteoporosis, cataracts, and muscle weakness. The pamphlet also provides information on the Lupus Foundation of America. 1 table.
30 Lupus
·
Depression in Lupus Source: Rockville, MD: Lupus Foundation of America, Inc. 1998. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus uses a question and answer format to examine the occurrence of depression during the course of lupus. It presents the physical and psychological symptoms of clinical depression, identifies the symptoms that indicate the depth and degree of depression, and highlights the most common psychological signs of clinical depression. The pamphlet discusses the occurrence and underdiagnosis of clinical depression in people with a chronic medical illness such as lupus. Other topics include the causes of depression in lupus, the treatment of depression with psychotropic medication or psychotherapy, the prognosis for depression in lupus, and cognitive changes in lupus. The pamphlet also provides information on the Lupus Foundation of America.
·
The Many Shades of Lupus: Information for Multicultural Communities Source: Bethesda, MD: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse. 2001. 36 p. Contact: Available from National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse. 1 AMS Circle, Bethesda, MD 20892-3675. (877) 226-4267 toll-free or (301) 495-4484. Fax (301) 718-6366. TTY (301) 565-2966. E-mail:
[email protected]. Website: www.niams.nih.gov. Price: One to 10 copies available free. Order Number: AR-231 (booklet). Summary: This booklet uses a question and answer format to provide people who have lupus with information on this autoimmune disease. Lupus can affect many parts of the body and can affect different people in different ways. The cause of lupus is unknown, but genetic and environmental factors are believed to be involved. The main types are systemic lupus erythematosus, discoid lupus erythematosus, and drug induced lupus. The booklet outlines the signs and symptoms of lupus, explains what a flare is, identifies the population most commonly affected by lupus, and discusses its diagnosis and management. In addition, the booklet highlights research on lupus and presents
Guidelines 31
government and nongovernment organizations that can provide additional information about lupus. ·
Childhood Lupus Source: Rockville, MD: Lupus Foundation of America, Inc. 2000. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: $0.25 each plus shipping and handling; brochures must be ordered in quantities of 100. Summary: This pamphlet provides parents who have a child with lupus with information on some of the medical considerations involved. The first step for every family is to be sure the diagnosis is correct. Next, the family should comply with physician instructions, because compliance has been shown to be one of the most important factors in determining outcome for people with systemic lupus erythematosus. The most important issue for parents of children with lupus is dealing with the side effects of drugs such as corticosteroids. Cytotoxic immunosuppressive drugs are an alternative to high doses of corticosteroids; however, they may increase a child's risk of developing certain forms of cancer. The pamphlet also addresses the social and psychological concerns that can have an impact on the outcome for children who have lupus and their families. These issues include dealing with activities where a child may be away overnight, educating a child about his or her condition and its treatment, educating others about a child's lupus, and coping with a child's anger or depression. The pamphlet also includes a brief discussion on the genetic component of lupus. The pamphlet concludes with information on the Lupus Foundation of America.
·
Joint and Muscle Pain in Systemic Lupus Erythematosus (SLE) Source: Rockville, MD: Lupus Foundation of America, Inc. 2000. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: $0.25 each plus shipping and handling; brochures must be ordered in quantities of 100. Summary: This pamphlet provides people who have lupus with information on joint and muscle pain. More than 80 percent of people with lupus will experience joint or muscle pain at some time during the course of their illness. The major cause of joint pain in lupus is inflammation. Pain in and around the joints is not always due to lupus arthritis but can be due to other medical disorders, including fibromyalgia, avascular necrosis of the bone, tendinitis and bursitis, and
32 Lupus
other types of arthritis. Inflammation of skeletal muscle, known as myositis, may develop in people with lupus. The pamphlet discusses these disorders in terms of their diagnosis and treatment. In addition, the pamphlet provides information on the Lupus Foundation of America. ·
Introduction to Lupus Source: Rockville, MD: Lupus Foundation of America, Inc. 2000. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: $0.25 each plus shipping and handling; brochures must be ordered in quantities of 100. Summary: This pamphlet provides people who have lupus with information on its types, cause, prevalence, symptoms, diagnosis, and treatment. Lupus is a chronic inflammatory disease that can affect various parts of the body. Types include cutaneous or discoid lupus, systemic lupus erythematosus (SLE), and drug induced lupus. Although the cause of lupus is unknown, both genetic and environmental factors may have a role in its development. Data indicate that lupus affects 1 out of every 185 Americans. Lupus can affect any part of the body, but most people have symptoms in only a few organs. Many people have mild disease affecting only a few organs, but others may experience serious and life threatening problems. Diagnosis is based on a person's having 4 or more of 11 symptoms that distinguish lupus from other diseases. Although there is no cure, early diagnosis and proper treatment can help to control the disease. Management involves resting when the disease is active, using sunscreen, and taking appropriate medications. Most people who have lupus have a normal lifespan. The pamphlet includes information on the Lupus Foundation of America. 1 table.
·
Lupus Erythematosus: A Patient's Guide Source: Rockville, MD: Lupus Foundation of America. 2000. 40 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: 3.95 plus shipping and handling. Summary: This booklet provides people who have lupus erythematosus (LE) with information on the types, frequency, cause, diagnosis, symptoms, and treatment of this autoimmune disease. LE involves changes in the immune system so that it attacks the body's own tissues. LE usually appears in one of two forms: cutaneous lupus erythematosus (CLE) or systemic lupus erythematosus (SLE). Other variants include
Guidelines 33
drug induced lupus, neonatal lupus, mixed connective tissue disease, and undifferentiated connective tissue disease. Most patients with CLE and SLE are women. The severity of lupus varies from mild to life threatening. The cause of CLE and SLE is unknown, but genetic and environmental factors are believed to be involved. Although CLE can be diagnosed by the history and appearance of the skin rash, diagnosing SLE is more difficult. A complete medical history, a physical examination, and laboratory tests are important components of the diagnostic workup. A diagnosis of SLE can be made if 4 of 11 diagnostic criteria are met. Special tests for SLE may be performed to confirm the diagnosis. Symptoms are varied, and any part of the body may be involved. The booklet presents the cutaneous, musculoskeletal, cardiovascular, gastrointestinal, urogenital, lymphatic, and neurological symptoms of SLE. Other considerations addressed include flares, employment, pregnancy, contraception, and hormone replacement therapy. The booklet also discusses drugs available to treat SLE, including aspirin and nonsteroidal antiinflammatory drugs, antimalarial drugs, corticosteroids, and immunosuppressives. Another topic is self care, focusing on physical measures and preventive coping strategies. The booklet includes a glossary of terms and information on the Lupus Foundation of America. 1 table. ·
Sjogren's Syndrome and Systemic Lupus Erythematosus Source: Rockville, MD: Lupus Foundation of America. 1999. 6 p. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus related brochures for $3.95 plus shipping and handling. Summary: This pamphlet provides people who have Sjogren's syndrome with information on this chronic autoimmune disorder in which the glands that produce tears and saliva do not function correctly. Sjogren's syndrome can occur alone or in association with other autoimmune diseases such as systemic lupus erythematosus (SLE) or rheumatoid arthritis. The disorder is termed primary Sjogren's syndrome when it occurs by itself and secondary Sjogren's syndrome when it is associated with another disease. The pamphlet discusses symptoms, including dryness of the mouth, eyes, and vagina. Other topics are the various laboratory tests and procedures used for diagnosis, as well as laboratory abnormalities associated with the disorder, including the presence of antinuclear antibodies and histocompatibility antigens, elevated erythrocyte sedimentation rate, mild anemia, and low albumin levels. In
34 Lupus
addition, the pamphlet examines the association between Sjogren's syndrome and SLE, discusses treatment with local and systemic agents that increase lubrication and moisture and with various drugs, comments on the prognosis for people who have Sjogren's syndrome, and provides information on the Lupus Foundation of America. ·
Drug-Induced Lupus Erythematosus Source: Rockville, MD: Lupus Foundation of America. 1999. 6 p. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus related brochures for $3.95 plus shipping and handling. Summary: This pamphlet uses a question and answer format to provide people who have lupus with information on drug-induced lupus erythematosus (DILE). This form of lupus is a side-effect of long-term use of certain medications used to treat chronic diseases (especially procainamide, hydralazine, and quinidine). The only well-defined genetic risk factor in DILE is the slow drug acetylation phenotype. Circumstantial evidence suggests that the metabolic change a drug undergoes in the body, rather than the drug itself, makes the drug able to react with the immune system. People with DILE may experience flu-like symptoms. The features are the same regardless of the medication. Tests that can help with diagnosis include the antinuclear antibody test and the antihistone test. The most important aspect of treating DILE is to identify the medication that is likely to be causing the problem and then discontinue it. Although most people recover once they stop using the medication, they may develop the syndrome if they take the medication again. The pamphlet explains the difference between DILE and systemic lupus erythematosus, lists drugs reported to induce lupus-like disease, and provides information on the Lupus Foundation of America.
·
What is Lupus? Source: Rockville, MD: Lupus Foundation of America, Inc. 1998. 12 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus provides an overview of this chronic inflammatory disease that can affect various parts of the
Guidelines 35
body. It describes the discoid, systemic, and drug-induced forms of lupus and discusses the cause of lupus. Although the cause is unknown, scientists believe that there is a genetic predisposition to the disease and that certain environmental factors may trigger the disease. The pamphlet outlines the symptoms of lupus and discusses its diagnosis. Lupus is diagnosed through information obtained from the medical history, a physical examination, and diagnostic testing. There are 11 symptoms that help physicians distinguish lupus from other diseases, and various laboratory tests may help diagnosis this disease. Tests include the lupus erythematosus cell test, the immunofluorescent antinuclear antibody test, and tests that measure complement levels in the blood and individual antigen antibody reactions. Skin and kidney biopsies may also be performed. The pamphlet describes the commonly prescribed medications for lupus, including nonsteroidal anti-inflammatory drugs, acetaminophen, corticosteroids, antimalarials, immunomodulating drugs, and anticoagulants. Other topics discussed include nutrition and diet, pregnancy, and the prognosis for people with lupus. The pamphlet also provides information on the Lupus Foundation of America. 2 tables. ·
Skin Disease in Lupus Source: Rockville, MD: Lupus Foundation of America, Inc. 1998. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus focuses on skin disease in lupus. It describes the skin lesions seen only in people with lupus erythematosus (LE), including chronic cutaneous LE (CCLE), subacute cutaneous LE (SCLE), and acute cutaneous LE (ACLE). Discoid LE (DLE) is the most common form of CCLE. DLE may be localized or generalized. DLE lesions are often red, scaly, and thickened; however, they are usually painless and not itchy. There are two clinical forms of SCLE lesions. The papulosquamous variety of SCLE is characterized by red plaques occurring on sun-exposed areas of the body. The other form of SCLE consists of red annular lesions occurring on the same parts of the body. The most common form of ACLE consists of flattened areas of red skin on the face that resemble a sunburn. These lesions tend to be photosensitive. The pamphlet also identifies other skin lesions in LE, including vasculitis and hair loss. Other topics discussed include photosensitivity, sun protection, and treatment for LE skin disease. The pamphlet also provides information on the Lupus Foundation of America.
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·
Lupus: Basics for Better Living Source: Rockville, MD: Lupus Foundation of America, Inc. 1998. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus presents lifestyle adjustments that they can make to help fight the disease and improve well-being. It stresses the need for people who have been told that they have lupus to have their diagnosis confirmed by a board certified rheumatologist or other recognized lupus specialist. The pamphlet describes various forms of lupus, including chronic cutaneous, druginduced, and systemic lupus erythematosus. It outlines ways patients can help themselves. Physical measures include being careful in the sun, eating a well-balanced diet, applying heat to painful joints, engaging in general conditioning exercises, consulting a rehabilitation specialist, and avoiding smoking. Preventive coping strategies include dealing with changes in barometric pressure, controlling fatigue, developing a good doctor-patient relationship, obtaining genetic and prognosis counseling, having a successful pregnancy, taking care of fevers or infections promptly, asking about cognitive therapy, discussing alternative therapies with a lupus specialist, and asking for help. The pamphlet also provides information on the Lupus Foundation of America.
·
Handout on Health: Systemic Lupus Erythematosus Source: Bethesda, MD: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse. 1997. 35 p. Contact: Available from National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse. 1 AMS Circle, Bethesda, MD 20892-3675. (877) 226-4267 or (301) 495-4484. Fax (301) 718-6366. TTY (301) 565-2966. E-mail:
[email protected]. Website: www.niams.nih.gov. Price: Single copy free. Order Number: AR-96HH (booklet), or AR-96L HH (large print). Summary: This booklet is for people with systemic lupus erythematosus (SLE), family members, friends, and others and focuses on the causes, symptoms, diagnosis, and treatment of SLE. It explains who is more likely to get SLE, what parts of the body it can affect, the characteristic cycles of illness and remission, and the several kinds of lupus. Also discussed are the factors that may influence getting this disease, common symptoms, how a doctor makes a diagnosis, the goals of treatment, and
Guidelines 37
the various medications used to treat lupus. The booklet presents some alternative therapies that may help patients cope with the stress of living with a chronic illness, emphasizing the importance of understanding the disease and its impact, receiving regular health care, developing strategies for maintaining wellness, and establishing a good support system. Also included are issues on the impact of lupus for women considering pregnancy. The booklet also describes current research on the causes and treatments for lupus by the National Institute of Arthritis and Musculoskeletal and Skin Diseases and other components of the National Institutes of Health. It then refers the reader to the network of voluntary health organizations for additional information about lupus. A large print version of this booklet is also available. ·
Kidney Disease and Lupus Source: Rockville, MD: Lupus Foundation of America. 1999. 6 p. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus related brochures for $3.95 plus shipping and handling. Summary: This pamphlet provides people who have systemic lupus erythematosus (SLE) with information on the kidney disease that accompanies it. This type of kidney disease, which is known as lupus nephritis or lupus glomerulonephritis, may affect about one third of those who have SLE. Symptoms that indicate the possibility of lupus nephritis include foamy, frothy urine; nocturnal urination; and fluid retention with weight gain and swelling. The clinical path of lupus nephritis is highly variable, with some people experiencing mild abnormalities and others experiencing more persistent, severe ones. Studies that can be performed to test for lupus nephritis are urinalysis, blood studies, 24 hour urine collection, imaging, and kidney biopsy. Corticosteroids and cytotoxic or immunosuppressive drugs are the major forms of drug therapy used to treat lupus nephritis. Despite treatment, some people may experience progressive loss of kidney function. These people will need hemodialysis or peritoneal dialysis and eventually kidney transplantation. The pamphlet also provides information on the Lupus Foundation of America. 1 table.
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The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “lupus” or synonyms. Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: ·
Handout on Health: Systemic Lupus Erythematosus (SLE) Summary: This consumer health education booklet describes this disease and its symptoms and contains information about diagnosis and treatment as well as current research efforts supported by the National Source: National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2929
·
Lupus Nephritis Summary: Brief overview of the symptoms, diagnosis, and treatment of lupus nephritis. Source: National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6519
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·
Lupus: A Patient Guide for Nurses and Other Health Professionals Summary: Lupus: A Patient Care Guide for Nurses and Other Health Professionals Source: National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6763
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Lupus: Causes, Symptoms, Testing, Treatment Summary: Provides a general overview of lupus, including the definition, types, causes, symptoms, diagnosis, triggers, treatment, and prognosis. Source: Lupus Foundation of America http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6439
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The Many Shades of Lupus: Information for Multicultural Communities Summary: This consumer health education booklet describes this disease and its symptoms as it relates to multicultural communities. Source: National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=2930
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The Neurological Sequelae Of Lupus Summary: A general overview of neurological sequelae of lupus that includes a description of the disorder, treatment, prognosis and research information. Source: National Institute of Neurological Disorders and Stroke, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=3798
40 Lupus
·
What is Lupus? Summary: A general overview of lupus, a disease that affects the immune system. Source: Lupus Foundation of Greater Washington http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=6053
The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to lupus. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html. NORD (The National Organization of Rare Disorders, Inc.) NORD provides an invaluable service to the public by publishing, for a nominal fee, short yet comprehensive guidelines on over 1,000 diseases. NORD primarily focuses on rare diseases that might not be covered by the previously listed sources. NORD’s Web address is www.rarediseases.org. To see if a recent fact sheet has been published on lupus, simply go to the following hyperlink: http://www.rarediseases.org/cgi-bin/nord/alphalist. A complete guide on lupus can be purchased from NORD for a nominal fee.
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Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats
·
drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html
·
Family Village: http://www.familyvillage.wisc.edu/specific.htm
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Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/
·
Med Help International: http://www.medhelp.org/HealthTopics/A.html
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Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/
·
Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/
·
WebMDÒHealth: http://my.webmd.com/health_topics
Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Acetaminophen: Analgesic antipyretic derivative of acetanilide. It has weak anti-inflammatory properties and is used as a common analgesic, but may cause liver, blood cell, and kidney damage. [NIH] Androgens: A class of sex hormones associated with the development and maintenance of the secondary male sex characteristics, sperm induction, and sexual differentiation. In addition to increasing virility and libido, they also increase nitrogen and water retention and stimulate skeletal growth. [NIH] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Ankle: That part of the lower limb directly above the foot. [NIH] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins,
42 Lupus
etc. [EU] Anticoagulants: Agents that prevent blood clotting. Naturally occurring agents in the blood are included only when they are used as drugs. [NIH] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Arteries: The vessels carrying blood away from the heart. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Bursitis: Inflammation of a bursa, occasionally accompanied by a calcific deposit in the underlying supraspinatus tendon; the most common site is the subdeltoid bursa. [EU] Cardiology: The study of the heart, its physiology, and its functions. [NIH] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Cataract: An opacity, partial or complete, of one or both eyes, on or in the lens or capsule, especially an opacity impairing vision or causing blindness. The many kinds of cataract are classified by their morphology (size, shape, location) or etiology (cause and time of occurrence). [EU] Chronic: Persisting over a long period of time. [EU] Contraception: The prevention of conception or impregnation. [EU] Contraceptive: conception. [EU]
An agent that diminishes the likelihood of or prevents
Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cyclophosphamide: Precursor of an alkylating nitrogen mustard antineoplastic and immunosuppressive agent that must be activated in the liver to form the active aldophosphamide. It is used in the treatment of lymphomas, leukemias, etc. Its side effect, alopecia, has been made use of in defleecing sheep. Cyclophosphamide may also cause sterility, birth defects, mutations, and cancer. [NIH] Cytotoxic: Pertaining to or exhibiting cytotoxicity. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH]
Guidelines 43
Diflunisal: A salicylate derivative and anti-inflammatory analgesic with actions and side effects similar to those of aspirin. [NIH] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Echocardiography: Ultrasonic recording of the size, motion, and composition of the heart and surrounding tissues. The standard approach is transthoracic. [NIH] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Endocarditis: Exudative and proliferative inflammatory alterations of the endocardium, characterized by the presence of vegetations on the surface of the endocardium or in the endocardium itself, and most commonly involving a heart valve, but sometimes affecting the inner lining of the cardiac chambers or the endocardium elsewhere. It may occur as a primary disorder or as a complication of or in association with another disease. [EU] Estrogens: A class of sex hormones associated with the development and maintenance of secondary female sex characteristics and control of the cyclical changes in the reproductive cycle. They are also required for pregnancy maintenance and have an anabolic effect on protein metabolism and water retention. [NIH] Etodolac: A nonsteroidal anti-inflammatory agent with potent analgesic and antiarthritic properties. It has been shown to be effective in the treatment of osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, and in the alleviation of postoperative pain. [NIH] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Heartburn: Substernal pain or burning sensation, usually associated with regurgitation of gastric juice into the esophagus. [NIH] Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU] Histocompatibility: The degree of antigenic similarity between the tissues of different individuals, which determines the acceptance or rejection of
44 Lupus
allografts. [NIH] Hormonal: Pertaining to or of the nature of a hormone. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hydralazine: A direct-acting vasodilator that is used as an antihypertensive agent. [NIH] Hydrocortisone: The main glucocorticoid secreted by the adrenal cortex. Its synthetic counterpart is used, either as an injection or topically, in the treatment of inflammation, allergy, collagen diseases, asthma, adrenocortical deficiency, shock, and some neoplastic conditions. [NIH] Hypertension: Persistently high arterial blood pressure. Various criteria for its threshold have been suggested, ranging from 140 mm. Hg systolic and 90 mm. Hg diastolic to as high as 200 mm. Hg systolic and 110 mm. Hg diastolic. Hypertension may have no known cause (essential or idiopathic h.) or be associated with other primary diseases (secondary h.). [EU] Ibuprofen: A nonsteroidal anti-inflammatory agent with analgesic properties used in the therapy of rheumatism and arthritis. [NIH] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors (innate i.). [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Influenza: An acute viral infection involving the respiratory tract. It is marked by inflammation of the nasal mucosa, the pharynx, and conjunctiva, and by headache and severe, often generalized, myalgia. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Intravenous: Within a vein or veins. [EU] Invasive: 1. having the quality of invasiveness. 2. involving puncture or incision of the skin or insertion of an instrument or foreign material into the body; said of diagnostic techniques. [EU] Ketoprofen:
An
ibuprofen-type
anti-inflammatory
analgesic
and
Guidelines 45
antipyretic. It is used in the treatment of rheumatoid arthritis and osteoarthritis. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Lubrication: The application of a substance to diminish friction between two surfaces. It may refer to oils, greases, and similar substances for the lubrication of medical equipment but it can be used for the application of substances to tissue to reduce friction, such as lotions for skin and vaginal lubricants. [NIH] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]
Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Menopause: Cessation of menstruation in the human female, occurring usually around the age of 50. [EU] Methotrexate: An antineoplastic antimetabolite with immunosuppressant properties. It is an inhibitor of dihydrofolate reductase and prevents the formation of tetrahydrofolate, necessary for synthesis of thymidylate, an essential component of DNA. [NIH] Mononucleosis: The presence of an abnormally large number of mononuclear leucocytes (monocytes) in the blood. The term is often used alone to refer to infectious mononucleosis. [EU] Morale: The prevailing temper or spirit of an individual or group in relation to the tasks or functions which are expected. [NIH] Myocarditis: Inflammation of the myocardium; inflammation of the muscular walls of the heart. [EU] Myositis: Inflammation of a voluntary muscle. [EU] Naproxen: An anti-inflammatory agent with analgesic and antipyretic properties. Both the acid and its sodium salt are used in the treatment of rheumatoid arthritis and other rheumatic or musculoskeletal disorders, dysmenorrhea, and acute gout. [NIH] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Nephritis: Inflammation of the kidney; a focal or diffuse proliferative or destructive process which may involve the glomerulus, tubule, or interstitial renal tissue. [EU] Ointments: Semisolid preparations used topically for protective emollient
46 Lupus
effects or as a vehicle for local administration of medications. Ointment bases are various mixtures of fats, waxes, animal and plant oils and solid and liquid hydrocarbons. [NIH] Ophthalmology: A surgical specialty concerned with the structure and function of the eye and the medical and surgical treatment of its defects and diseases. [NIH] Osteonecrosis: Death of a bone or part of a bone, either atraumatic or posttraumatic. [NIH] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Pericarditis: Inflammation of the pericardium. [EU] Pharmacists: Those persons legally qualified by education and training to engage in the practice of pharmacy. [NIH] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Photosensitivity: An abnormal cutaneous response involving the interaction between photosensitizing substances and sunlight or filtered or artificial light at wavelengths of 280-400 mm. There are two main types : photoallergy and photoxicity. [EU] Piroxicam: 4-Hydroxy-2-methyl-N-2-pyridyl-2H-1,2-benzothiazine-3carboxamide 1,1-dioxide. A non-steroidal anti-inflammatory agent that is well established in the treatment of rheumatoid arthritis and osteoarthritis. Its usefulness has also been demonstrated in the treatment of musculoskeletal disorders, dysmenorrhea, and postoperative pain. Its long half-life enables it to be administered once daily. The drug has also been shown to be effective if administered rectally. Gastrointestinal complaints are the most frequently reported side effects. [NIH] Pneumonia: Inflammation of the lungs with consolidation. [EU] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH]
Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Procainamide: A derivative of procaine with less CNS action. [NIH] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU]
Guidelines 47
Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Psychotherapy: A generic term for the treatment of mental illness or emotional disturbances primarily by verbal or nonverbal communication. [NIH]
Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of the heart as it contracts. [NIH] Quinidine: An optical isomer of quinine, extracted from the bark of the Cinchona tree and similar plant species. This alkaloid dampens the excitability of cardiac and skeletal muscles by blocking sodium and potassium currents across cellular membranes. It prolongs cellular action potential, and decreases automaticity. Quinidine also blocks muscarinic and alpha-adrenergic neurotransmission. [NIH] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Registries: The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers. [NIH] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Retina: The ten-layered nervous tissue membrane of the eye. It is continuous with the optic nerve and receives images of external objects and transmits visual impulses to the brain. Its outer surface is in contact with the choroid and the inner surface with the vitreous body. The outer-most layer is pigmented, whereas the inner nine layers are transparent. [NIH] Rheumatoid: Resembling rheumatism. [EU] Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH] Saliva: The clear, viscous fluid secreted by the salivary glands and mucous glands of the mouth. It contains mucins, water, organic salts, and ptylin. [NIH] Sedimentation: The act of causing the deposit of sediment, especially by the use of a centrifugal machine. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic
48 Lupus
phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Subacute: Somewhat acute; between acute and chronic. [EU] Sulindac: A sulfinylindene derivative whose sulfinyl moiety is converted in vivo to an active anti-inflammatory analgesic that undergoes enterohepatic circulation to maintain constant blood levels without causing gastrointestinal side effects. [NIH] Sunburn: An injury to the skin causing erythema, tenderness, and sometimes blistering and resulting from excessive exposure to the sun. The reaction is produced by the ultraviolet radiation in sunlight. [NIH] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Syphilis: A contagious venereal disease caused by the spirochete treponema pallidum. [NIH] Systemic: Pertaining to or affecting the body as a whole. [EU] Tendinitis: Inflammation of tendons and of tendon-muscle attachments. [EU] Thrombocytopenia: Decrease in the number of blood platelets. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Urinalysis: Examination of urine by chemical, physical, or microscopic means. Routine urinalysis usually includes performing chemical screening tests, determining specific gravity, observing any unusual color or odor, screening for bacteriuria, and examining the sediment microscopically. [NIH] Urogenital: Pertaining to the urinary and genital apparatus; genitourinary. [EU]
Vaccination: The introduction of vaccine into the body for the purpose of inducing immunity. Coined originally to apply to the injection of smallpox vaccine, the term has come to mean any immunizing procedure in which vaccine is injected. [EU]
Guidelines 49
Vasculitis: Inflammation of a vessel, angiitis. [EU] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU]
Seeking Guidance 51
CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with lupus. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.9 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with lupus. The chapter ends with a discussion on how to find a doctor that is right for you.
Associations and Lupus As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.10 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 10 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 9
52 Lupus
influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): ·
American Juvenile Arthritis Organization Address: American Juvenile Arthritis Organization 1330 West Peachtree Street, Atlanta, GA 30309 Telephone: (404) 872-7100 Toll-free: (800) 283-7800 Fax: (404) 872-0457 Email:
[email protected] Web Site: http://www.arthritis.org Background: The American Juvenile Arthritis Organization (AJAO), a not-for-profit organization, is a Council of the Arthritis Foundation devoted to serving the needs of children, teens, and young adults with childhood rheumatic diseases and their families. These diseases include Juvenile Rheumatoid Arthritis, Lupus (Systemic Lupus Erythematosis), and Ankylosing Spondylitis. Juvenile Arthritis is medically different from the adult form of arthritis and may be far more severe in some cases. The American Juvenile Arthritis Organization was founded in 1981 to help serve the special needs of affected individuals and families, friends, and health care professionals. The Organization enables members to exchange ideas and support and serves as a clearinghouse of information for the public on topics from medications to educational rights to social services. It sponsors an annual conference; monitors and promotes legislation that benefits individuals with Juvenile Arthritis; provides appropriate referrals; and sponsors research concerning potential causes, improved treatments, preventive measures, and possible cures. The American Juvenile Arthritis Organization provides a variety of educational materials including a quarterly newsletter, pamphlets, fact sheets, selfhelp manuals, and a video lending library. Relevant area(s) of interest: Lupus
Seeking Guidance 53
·
European Lupus Erythematosus Federation Address: European Lupus Erythematosus Federation 1 Eastern Road, Romford, Essex, RM1 3NH, United Kingdom Telephone: 44- 1708-73 12 51 Toll-free: (800) 558-0121 Fax: 44-1708-73 12 52 Email:
[email protected] Web Site: http://www.elef.rheumanet.org/ Background: The European Lupus Erythematosus Federation (ELEF) is an international voluntary federation that consists of national lupus groups throughout Europe. Systemic lupus erythematosus (SLE), also known as lupus, is an autoimmune disorder characterized by chronic inflammation affecting connective tissues of the body. Different tissues and organs may be affected, and the range and severity of associated symptoms and findings may vary from case to case. In some affected individuals, symptoms may include extreme fatigue; muscle pain; joint swelling, stiffness, and pain; skin rashes; hair loss; and other abnormalities. Established in 1989, the European Lupus Erythematosus Federation currently represents 15 countries, 16 lupus organizations, and approximately 16,500 affected individuals and family members. The ELEF is committed to collecting information on all medical and psychosocial aspects of lupus; promoting awareness of the disease among individuals with lupus, the general public, and members of the health, welfare, and medical professions; and encouraging and conducting surveys and research projects related to the disease and publishing the results of such research. The Federation is also dedicated to promoting awareness of lupus support groups that are available for affected individuals and family members in each member country; sponsoring or promoting European symposia on all aspects of lupus; gaining representation on any European or international body whose interests will be of benefit to members of the Federation; and assisting with the establishment of support groups in other European countries where none currently exists. The Federation also conducts international surveys on lupus, publishes a biannual newsletter entitled 'Caring and Sharing,' and has a web site on the Internet. Relevant area(s) of interest: Disseminated Lupus Erythematosus, Lupus, Systemic Lupus Erythematosus
·
Lupus Canada Address: Lupus Canada P.O. Box 64034, 5512 - 4 Street N.W., Calgary, Alberta, T2K 6J1, Canada
54 Lupus
Telephone: (403) 274-5599 Toll-free: (800) 661-1468 Fax: (403) 274-5599 Email:
[email protected] Web Site: http://www.lupuscanada.org Background: Lupus Canada is a national association of regional lupus support groups and their various branches. These groups of volunteers are dedicated to providing support and information to people who have lupus, their families, and friends. Lupus is a chronic autoimmune disorder that can affect any organ of the body. In lupus, the body's immune system that defends against invading or 'foreign' organisms (e.g., viruses, bacteria, germs) begins to malfunction and fails to distinguish between the body's own tissues and these foreign invaders. As a result, the body's natural defenses (antibodies) begin to attack the body's own tissue. Established in 1987, Lupus Canada produces educational materials including a pamphlet entitled 'Lupus: An Introduction,' and a booklet entitled 'Lupus: The Disease With 1000 Faces.' Interested individuals can contact Lupus Canada at its e-mail address lupuscanatcadvision.com or on the world wide web at http://www.lupuscanada.org. Relevant area(s) of interest: Disseminated Lupus Erythematosus, Lupus, Systemic Lupus Erythematosus ·
Lupus Foundation of America (LFA) Address: us Foundation of America (LFA). 4 Research Place, Suite 180, Rockville, MD 20850-3226. (301) 670- 9292 or (800) 558-0121; FAX (301) 670-9486. Telephone: (518) 851-2612 Toll-free: (800) 558-0121 Background: This catalog lists and briefly describes resources available from the Lupus Foundation of America (LFA). These resources include brochures, fact sheets, books, booklets, materials for low literacy populations, and videotapes for individuals with lupus and the health professionals who care for them. Some of the items are not available through LFA but have been approved by the Patient Education Committee. Price and ordering information is included, and items available in Spanish are noted. Relevant area(s) of interest: Systemic Lupus Erythematosus
Seeking Guidance 55
·
Lupus Foundation of America, Inc Address: Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850 Telephone: (301) 670-9292 Toll-free: (800) 558-0121 Fax: (301) 670-9486 Web Site: http://www.lupus.org/lupus Background: The Lupus Foundation of America is a national not-forprofit organization that was established in 1977. The primary purposes of the Foundation are the eradication of Lupus through research, the early detection of undiagnosed cases through awareness promotion, and the alleviation of suffering through patient support programs. The Lupus Foundation has more than 90 local chapters serving hundreds of thousands of people throughout the United States and 73 International Associated Groups in 37 countries worldwide. The Services provided by the Foundation and its chapters include informational materials, referrals, patient educational meetings and seminars, support groups, hospital visits, grants, and bequests. The Foundation functions as an advocate for people with Lupus and seeks to raise awareness and understanding of the disorder among elected and appointed government officials. To this end, the Foundation participates in coalitions with other health agencies to make its mission known to decision and policy makers. A wide variety of educational materials are produced by the organization including brochures, pamphlets, and a newsletter entitled 'Lupus News.' Some materials are available in Spanish. Relevant area(s) of interest: Lupus, Systemic Lupus Erythematosus
·
Lupus UK Address: Lupus UK 1 Eastern Road, Romford, Essex, RM1 3NH, United Kingdom Telephone: 01708 731251 Toll-free: (800) 661-1468 Fax: 01708 731252 Email:
[email protected] Web Site: http://www.geocities.com/HotSprings/2911/ Background: Lupus UK is a voluntary organization in the United Kingdom dedicated to providing information and support to individuals affected by systemic lupus erythematosus (SLE), an autoimmune disorder that is characterized by chronic inflammation affecting the skin, joints, or other connective tissues of the body. Different tissues and organs may be involved, and the range and severity of associated
56 Lupus
symptoms and findings may vary greatly from case to case. In some individuals with the disorder, symptoms may include weakness and fatigue; persistent flu- like symptoms; joint inflammation, swelling, stiffness, and pain; skin rashes, such as the appearance of a rash across the bridge of the nose and the cheeks ('butterfly' rash); abnormal sensitivity of the skin to light; hair loss; and other abnormalities. Lupus UK was established in 1978 and currently consists of 27 regional groups throughout Great Britain and Northern Ireland. The organization, which is a self-help group run by volunteers, is committed to providing support and assistance to all affected individuals; promoting communication between members and the medical professionals involved in their care; and offering practical assistance. Lupus UK is also dedicated to promoting professional and public awareness of lupus by gathering and publishing information on all aspects of the disease; raising funds to assist affected individuals and to finance research projects; and working with other organizations to promote the aims of Lupus UK. Affected individuals and family members who join the organization are automatically enrolled in a Lupus UK regional support group; have the opportunity to participate in educational and social meetings; and receive a local newsletter as well as a national newsletter entitled 'News and Views.' Lupus UK also offers a factsheet series and several books on the disorder and has a web site on the Internet. Relevant area(s) of interest: Disseminated Lupus Erythematosus, Lupus, Systemic Lupus Erythematosus ·
Toxic Discovery Network, Inc Address: Toxic Discovery Network, Inc. 1906 Grant Lane, Columbia, MO 65203 Telephone: (573) 445-0861 Toll-free: (800) 558-0121 Fax: (573) 445-8539 EBackground: The Toxic Discovery Network, Inc. (TDN) is a voluntary not-for- profit organization dedicated to disseminating information and providing support concerning silicone related issues. TDN's primary goals are to be a source of support for people seeking help with silicone related issues; to be a centralized information center for silicone issues; to aid in the identification of symptoms related to silicone illness; to develop a professional networking team of doctors, lawyers, and other medical professionals who will see and treat people with silicone disease; to explore current and future silicone issues; to educate the nation about the danger of silicone related problems; to network with the National Breast Implant Task Force, Inc.; and to raise funds for silicone research and
Seeking Guidance 57
possible cure. Established in 1994 and consisting of 1,500 members, TDN produces educational materials including a newsletter, brochures, and a registry. The organization coordinates support groups, supports advocacy efforts, encourages networking, supports research, promotes education, and provides appropriate referrals. Relevant area(s) of interest: Lupus, Scleroderma
Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations.
The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about lupus. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797. DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “lupus” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “lupus”. Type the following hyperlink into your Web browser:
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http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “lupus” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with lupus. You should check back periodically with this database since it is updated every 3 months. The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/cgi-bin/nord/searchpage. Select the option called “Organizational Database (ODB)” and type “lupus” (or a synonym) in the search box.
Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. The following Internet sites may be of particular interest: ·
Lupus Foundation of America http://www.lupus.org/support/groups.html
·
Lupus Foundation of Pennsylvania http://www.lupuspa.org/newfiles/support.html
Seeking Guidance 59
Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with lupus must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:11 ·
If you are in a managed care plan, check the plan's list of doctors first.
·
Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
·
Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide.
·
Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide.
Additional steps you can take to locate doctors include the following: ·
Check with the associations listed earlier in this chapter.
·
Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors.
·
The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at http://www.abms.org/newsearch.asp.12 You can also contact the ABMS by phone at 1-866-ASK-ABMS.
·
You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found
This section has been adapted from the AHRQ: http://www.ahrq.gov/consumer/qntascii/qntdr.htm. 12 While board certification is a good measure of a doctor's knowledge, it is possible to receive quality care from doctors who are not board certified. 11
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in “Physician Select” at the AMA's Web site: http://www.amaassn.org/aps/amahg.htm. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases.
Finding a Rheumatologist The American College of Rheumatology (ACR) maintains a geographic directory of member physicians called “Find a Rheumatologist.” To access this database, log on to http://www.rheumatology.org/directory/geo.asp. You will be given the option to search for a rheumatologist by name, by U.S. State, or by country. To contact the ACR, you can use the following information: American College of Rheumatology 1800 Century Place, Suite 250 Atlanta, GA 30345 Phone: (404) 633-3777 Fax: (404) 633-1870 E-mail:
[email protected]
Selecting Your Doctor13 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: ·
Give me a chance to ask questions about lupus?
·
Really listen to my questions?
13 This
section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
Seeking Guidance 61
·
Answer in terms I understood?
·
Show respect for me?
·
Ask me questions?
·
Make me feel comfortable?
·
Address the health problem(s) I came with?
·
Ask me my preferences about different kinds of treatments for lupus?
·
Spend enough time with me?
Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other.
Working with Your Doctor14 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: ·
You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know.
·
It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable.
·
Bring a “health history” list with you (and keep it up to date).
·
Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications.
·
Tell your doctor about any natural or alternative medicines you are taking.
·
Bring other medical information, such as x-ray films, test results, and medical records.
·
Ask questions. If you don't, your doctor will assume that you understood everything that was said.
This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
14
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·
Write down your questions before your visit. List the most important ones first to make sure that they are addressed.
·
Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers.
·
Ask your doctor to draw pictures if you think that this would help you understand.
·
Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first.
·
Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment.
·
Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you.
·
After leaving the doctor's office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment.
By following these steps, you will enhance the relationship you will have with your physician.
Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:15 ·
Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html
·
Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
15
Seeking Guidance 63
·
Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html
Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Granuloma: A relatively small nodular inflammatory lesion containing grouped mononuclear phagocytes, caused by infectious and noninfectious agents. [NIH] Keratoconjunctivitis: Inflammation of the cornea and conjunctiva. [EU] Lacrimal: Pertaining to the tears. [EU] Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Spondylitis: Inflammation of the vertebrae. [EU] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Urology: A surgical specialty concerned with the study, diagnosis, and treatment of diseases of the urinary tract in both sexes and the genital tract in the male. It includes the specialty of andrology which addresses both male genital diseases and male infertility. [NIH] Xerostomia: Dryness of the mouth from salivary gland dysfunction, as in Sjögren's syndrome. [EU]
Clinical Trials 65
CHAPTER 3. CLINICAL TRIALS AND LUPUS Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning lupus.
What Is a Clinical Trial?16 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for lupus is to try it on patients in a clinical trial.
The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm.
16
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What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: ·
Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely.
·
Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on lupus.
·
Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for lupus compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment.
How Is a Clinical Trial Conducted? Various organizations support clinical trials at medical centers, hospitals, universities, and doctors' offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on lupus carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on lupus. In other clinical trials, where a new surgery or device (not a medicine) is being tested,
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patients in the control group may receive a “sham treatment.” This treatment, like a placebo, has no effect on lupus and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how lupus develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for lupus. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial's investigators and provide details about your diagnosis and medical history. If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo
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surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information.
Recent Trials on Lupus The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to lupus.17 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. ·
Anti-CD20 in Systemic Lupus Erythematosus Condition(s): Lupus Erythematosus, Systemic Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: The purpose of this study is to determine the safety and effectiveness of rituximab (anti-CD20) in treating systemic lupus erythematosus (SLE). White blood cells in the body called B cells give off substances that are active in promoting SLE disease. Researchers have found that anti-CD20 can block production of these substances in another disease. This study explores whether anti-CD20 will also be safe in people with SLE and whether it may be effective in treating SLE. Phase(s): Phase I Study Type: Interventional
17
These are listed at www.ClinicalTrials.gov.
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Contact(s): Jan Stansberry, RN, MSN 215-662-4658
[email protected]; Pennsylvania; Jan Stansberry, RN, MSN, Philadelphia, Pennsylvania, 19104, United States; Recruiting Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00036491;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Autologous Peripheral Blood Stem Cell Transplantation in Patients With Life Threatening Autoimmune Diseases Condition(s): Purpura, Schoenlein-Henoch; Graft Versus Host Disease; Anemia, Hemolytic, Autoimmune; Rheumatoid Arthritis; Churg-Strauss Syndrome; Hypersensitivity Vasculitis; Wegener's Granulomatosis; Systemic Lupus Erythematosus; Giant Cell Arteritis; Pure Red Cell Aplasia; Juvenile Rheumatoid Arthritis; Polyarteritis Nodosa; Autoimmune Thrombocytopenic Purpura; Takayasu Arteritis Study Status: This study is currently recruiting patients. Sponsor(s): Fairview University Medical Center Purpose - Excerpt: Objectives: I. Determine whether there is prompt engraftment after autologous peripheral blood stem cell transplantation using filgrastim (G-CSF) mobilization in patients with life threatening autoimmune diseases. II. Determine the kinetics of T- and B-cell immune reconstitution after a combination of timed plasmapheresis, high dose cyclophosphamide and total lymphoid irradiation, and posttransplant immunosuppression with cyclosporine in these patients. III. Determine whether this treatment regimen beneficially influences the clinical course of these patients. Study Type: Interventional Contact(s): Minnesota; Fairview University Medical Center, Minneapolis, Minnesota, 55455, United States; Recruiting; Arne Slungaard 612-2732800. Study chairs or principal investigators: Arne Slungaard, Study Chair; Fairview University Medical Center Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006055;jsessionid=C86124 E234F08730F120E192C53539F4
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Dexamethasone in Lupus Congenital Heart Block of Newborns Condition(s): Congenital heart block; Neonatal lupus; Atrioventricular nodal dysfunction; Myocardial injury Study Status: This study is currently recruiting patients.
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Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study has two parts. The goal of the first part is to find out the usefulness of giving medications known as fluorinated steroids to pregnant women whose unborn children have a heart condition called congenital heart block (CHB). CHB occurs in some babies with neonatal lupus, a form of lupus that affects newborns but usually disappears by the time the infant is 3-6 months old. We will look at whether giving the steroid drug dexamethasone to pregnant women every day by mouth improves the heart function and general health of newborns who have autoantibody-associated CHB. This form of CHB is linked to the presence of certain blood proteins (antibodies) in the mother. Participants in this study will be pregnant women requiring less than 10 milligrams (mg) of prednisone per day, whose doctors identify them before 30 weeks of pregnancy to be carrying a fetus with CHB. Study participants will take either 4 mg per day of dexamethasone or a placebo (inactive drug) for at least 6 weeks. We will assign each woman at random to receive either dexamethasone or placebo. The second part of the study will examine pregnant women who are at high risk for having babies with CHB to identify the earliest signs of heart problems in the unborn child that can be detected using ultrasound testing. We will follow 100 mothers considered at high risk for having a child with CHB by doing weekly echocardiograms (a noninvasive method that uses ultrasound to produce images of the heart) of the fetus from the 16th week of pregnancy. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00007358;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Genetic Analysis of Immune Disorders Condition(s): Healthy; Immunologic Deficiency Syndrome; Severe Combined Immunodeficiency
Syndrome;
Job's
Study Status: This study is currently recruiting patients. Sponsor(s): National Human Genome Research Institute (NHGRI) Purpose - Excerpt: The purposes of this study are to 1) identify the genes responsible for certain immune disorders, 2) learn about the medical problems they cause, and 3) learn how to predict who is likely to develop
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these disorders and what the risk is of passing them on to children. The immune system is the body's defense system. Some immune deficiencies impair a person's ability to fight infections; others render a person susceptible to allergies, or to autoimmune diseases such as lupus or arthritis, in which the immune cells (white blood cells) attack and destroy the body's own tissues. Patients with immune disorders known or suspected to have a genetic basis and their family members may enroll in this study. Eligibility will be determined by a review of the patient's medical records and family medical history. Participants will provide a small blood sample for genetic (DNA) and white blood cell analysis. Gene samples (but not white blood cells) may also be obtained by mouth brushing or skin biopsy. For the mouth brushing, a small brush is rubbed against the inside of the cheeks for 1 minute to wipe off some cells. For the skin biopsy, a small circle of skin (about 1/8 inch) is removed under local anesthetic. Pregnant women may be asked to provide a fetal sample (amniotic fluid cells or chorionic villus sample). All samples will be used for immune or genetic studies of the family's immune disorder. If test results show a specific genetic variation responsible for the family's immune disorder, a report will be sent to the patient's doctor or genetic counselor, who will discuss the implications for the family. NIH researchers and genetic counselors will also be available to explain results and answer questions. Information will not be available in the case of disorders that cannot yet be linked to a specific genetic abnormality. Information from this study will increase knowledge about the immune system and what causes immune deficiencies. Participants may also learn the underlying cause of an immune disorder that affects them or someone in their family-information may be useful in guiding treatment and in making decisions regarding family planning. Study Type: Observational Contact(s): Maryland; National Human Genome Research Institute (NHGRI), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001467;jsessionid=C86124 E234F08730F120E192C53539F4 ·
High-Dose Intravenous (IV) Cyclophosphamide Versus Monthly IV Cyclophosphamide Condition(s): Lupus Erythematosus, Systemic Study Status: This study is currently recruiting patients.
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Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study compares the effectiveness of high-dose cyclophosphamide treatment with the "gold standard" treatment, monthly intravenous (IV) cyclophosphamide, in people with moderate to severe lupus that does not respond to high-dose corticosteroid therapy. We will give patients either IV cyclophosphamide (750 milligrams per square meter of body surface area) monthly for 6 months, followed by quarterly maintenance therapy, or high-dose IV cyclophosphamide (50 milligrams per kilogram body weight per day) for the first four days of the study. Patients will be followed for 24 months after therapy. Phase(s): Phase II Study Type: Interventional Contact(s): Michelle Petri, M.D., M.P.H. 410-614-1573
[email protected]; Maryland; Johns Hopkins University Division of Rheumatology, Baltimore, Maryland, 21205, United States; Recruiting; Philip Seaman 410-614-1573
[email protected]. Study chairs or principal investigators: Michelle Petri, M.D., M.P.H., Principal Investigator; Johns Hopkins University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00005778;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Humanized LL2IGG to Treat Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study will examine the safety of a new genetically engineered antibody called hLL2 (epratuzumab) in patients with systemic lupus erythematosus (SLE). It will also evaluate whether hLL2 can lessen overall disease activity in SLE or kidney damage in patients with lupus nephritis. Patients 18 years of age and older with mild to moderately active SLE may be eligible for this study. Candidates will be screened with blood and urine tests, a chest X-ray, electrocardiogram (EKG), tuberculin skin test, and screening tests for certain cancers. All participants will receive weekly infusions of hLL2 for 4 weeks. The drug is given through a catheter (small plastic tube) placed through a needle in an arm vein. Each infusion takes about 2 hours, after which the patient is observed in the clinic for 1 to 2 hours before being discharged from the
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clinic. The first 3 patients in the study will receive the lowest of three different doses used in the study. If this dose is well tolerated, the next 5 patients will receive a higher dose. If the second dose is tolerated, the last 5 patients will be given the highest dose. If any serious problems are encountered at a dose, patients in the next group will receive either the same or lower dose before being advanced to the next level. Patients in the first group will continue taking prednisone at their regular dose. All other patients will have their prednisone tapered gradually, if their condition permits. Patients who have a disease flare may have their prednisone increased for up to 2 weeks, followed by a gradual taper. If the flare is severe or does not respond to the increased prednisone, the patient will be taken off the study and treated to control the disease. Patients will be evaluated at various intervals for up to 8 weeks after the last dose. Several of the screening tests will be repeated throughout the study. No more than 500 ml of blood-the equivalent of a single blood donation-will be collected during a 2-month period. Participants may also be asked to undergo the following optional procedures before starting treatment, 1 week after the last dose and 8 weeks after the last treatment dose: - Bone marrow aspiration - to collect cells from the bone marrow. The hip area is anesthetized and a special needle is used to draw bone marrow from the hipbone. - Tonsil biopsy - The area to be biopsied is numbed with a local anesthetic and small pieces of tissue will be removed with a special type of forceps. (The procedure may be done under general anesthetic.) - Magnetic resonance imaging (MRI) of the abdomen - The patient lies on a table within a metal cylinder (the MRI scanner) for about 30 to 40 minutes while images are obtained with the use of a strong magnetic field and radio waves. Phase(s): Phase I Study Type: Interventional Contact(s): Maryland; National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00011908;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Immune System Related Kidney Disease Condition(s): Glomerulonephritis; Lupus Nephritis; Glomerulonephritis; Nephritis; Nephrotic Syndrome Study Status: This study is currently recruiting patients.
Membranous
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Sponsor(s): National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Purpose - Excerpt: Kidney diseases related to the immune system include, nephrotic syndrome, glomerulonephritis, membranous nephropathy, lupus nephritis, and nephritis associated with connective tissue disorders. This study will allow researchers to admit and follow patients suffering from autoimmune diseases of the kidney. It will attempt to provide information about the causes and specific abnormalities associated with autoimmune kidney disease. Patients with kidney disease as a result of their immune system, and patients with diseases of the immune system who may later develop kidney disease, will be potential subjects for this study. Patients will undergo a history and physical examination, and standard laboratory test to more closely understand the causes, signs, symptoms, and responses to medication of these diseases. Based on these evaluations the patients may qualify as candidates for other experimental studies. At any time these patients may be asked to submit blood or urine samples for further research. Study Type: Observational Contact(s): Maryland; National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001979;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Phase I Study of Immune Ablation and CD34+ Peripheral Blood Stem Cell Support in Patients With Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): Northwestern Memorial Hospital Purpose - Excerpt: Objectives: I. Determine the safety of immune ablation with high-dose cyclophosphamide and anti-thymocyte globulin followed by peripheral blood stem cell support in patients with systemic lupus erythematosus. Phase(s): Phase I Study Type: Interventional Contact(s): Illinois; Northwestern Memorial Hospital, Chicago, Illinois, 60611, United States; Recruiting; Ann Traynor 312-908-5284; Wisconsin; University of Wisconsin Hospital and Clinics, Madison, Wisconsin,
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53792-0001, United States; Recruiting; Frank Graziano 608-263-6186. Study chairs or principal investigators: Ann Traynor, Study Chair; Northwestern Memorial Hospital Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00017641;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Phase II Study of Ultraviolet A-1 Light Therapy for Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): National Center for Research Resources (NCRR); Louisiana State University Purpose - Excerpt: Objectives: I. Evaluate the mechanisms of ultraviolet A-1 light therapy in patients with systemic lupus erythematosus and normal controls. Phase(s): Phase II Study Type: Interventional Contact(s): Louisiana; Alton Ochsner Medical Foundation Hospital, New Orleans, Louisiana, 70121, United States; Recruiting; Jawed Alam 504842-3314; Louisiana State University School of Medicine, New Orleans, Louisiana, 70112-2822, United States; Recruiting; Hugh McGrath, Jr. 504568-4939. Study chairs or principal investigators: Hugh McGrath, Jr., Study Chair; Louisiana State University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004375;jsessionid=C86124 E234F08730F120E192C53539F4
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Pilot Study of Cyclophosphamide in Patients With Life-Threatening Systemic Lupus Erythematosus or Antiphospholipid Antibody Syndrome Condition(s): Systemic Antibody Syndrome
Lupus
Erythematosus;
Antiphospholipid
Study Status: This study is currently recruiting patients. Sponsor(s): Johns Hopkins Oncology Center Purpose - Excerpt: Objectives: I. Determine the induction of durable remission in patients with life-threatening systemic lupus erythematosus or antiphospholipid antibody syndrome treated with cyclophosphamide. II. Determine the toxicity of this drug in these patients.
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Study Type: Interventional Contact(s): Maryland; Johns Hopkins Oncology Center, Baltimore, Maryland, 21231, United States; Recruiting; Robert A. Brodsky 410-9552813; Johns Hopkins University School of Medicine, Baltimore, Maryland, 21205, United States; Recruiting; Michelle Petri 410-955-3823. Study chairs or principal investigators: Robert A. Brodsky, Study Chair; Johns Hopkins Oncology Center Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00010400;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Pilot Study of Total Body Irradiation in Combination With Cyclophosphamide, Anti-thymocyte Globulin, and Autologous CD34Selected Peripheral Blood Stem Cell Transplantation in Children With Refractory Autoimmune Disorders Condition(s): Systemic Sclerosis; Systemic Lupus Erythematosus; Dermatomyositis; Juvenile Rheumatoid Arthritis; Autoimmune Diseases Study Status: This study is currently recruiting patients. Sponsor(s): Fred Hutchinson Cancer Research Center Purpose - Excerpt: Objectives: I. Determine the safety and long term complications of total body irradiation in combination with cyclophosphamide, anti-thymocyte globulin, and autologous CD34selected peripheral blood stem cell (PBSC) transplantation in children with refractory autoimmune disorders. II. Determine the efficacy of this treatment regimen in these patients. III. Determine the reconstitution of immunity after autologous CD34-selected PBSC transplantation in these patients. IV. Determine engraftment of autologous CD34-selected PBSC in these patients. Study Type: Interventional Contact(s): Washington; Fred Hutchinson Cancer Research Center, Seattle, Washington, 98109, United States; Recruiting; Ann Woolfrey 206667-4453. Study chairs or principal investigators: Ann Woolfrey, Study Chair; Fred Hutchinson Cancer Research Center Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00010335;jsessionid=C86124 E234F08730F120E192C53539F4
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Positron Emission Tomography (PET) to Locate Areas of White Blood Cell Activity Condition(s): Lupus Erythematosus; Systemic Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study will examine whether PET imaging can reveal what is happening in lymph nodes of patients with systemic lupus erythematosus, or lupus, during periods of active disease. Patients may have periods of active disease when they may feel sick with fever, fatigue, and aching or swollen joints. Their blood tests are abnormal and their kidney, lungs or heart may be affected. At other times, the disease is inactive, and patients feel well, their blood is normal, and there is no evidence of organ disease. In lupus, like other autoimmune diseases, the body's immune system attacks it own healthy tissues. Activated lymphocytes (a type of immune cell) lead to the production of antibodies and chemical signals that contribute to the disease process. In animals with lupus, these cells are activated in the lymphoid organs, such as the lymph nodes or spleen. It is not known exactly where these cells are activated in humans. Because some lymph nodes are located deep inside the chest and abdomen; surgery is currently the only way to examining them. PET imaging may provide an alternative, non-invasive, means of obtaining information on lymph node activity in humans. This test uses a radioactive sugar molecule called F18-FDG to find areas of increased cellular activity in the body. (Cells use sugar for fuel, so active cells, such as active lymphocytes, uses more FDG than other body tissues.) This study will determine whether PET can detect these areas of increased activity in lupus during active disease. Patients with active or inactive lupus may be eligible for this study. Candidates are screened with a history, physical examination, and routine blood and urine tests. Women who are pregnant or breastfeeding may not participate. Participants will undergo PET scanning. On the day of the scan they have a brief medical history and physical examination and a blood sample is drawn to check blood count and look for markers of lymphocyte activation. Then, a small plastic tube (catheter) is placed into a vein in the patient's arm, the FDG is injected through the catheter, and the patient rests for an hour. For the scan, the patient lies flat in a cradle that is moved into the central hole of the doughnut-shaped PET camera, and pictures are taken over the next 2 hours, with the patient lies quietly, without moving the head or arms. After the scan is finished, the patient empties the bladder approximately every hour for 6 hours to excrete the radioactive sugar. Study Type: Observational
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Contact(s): Maryland; National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00029926;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Randomized Study of Oral Contraceptives or Hormone Replacement Therapy in Women With Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): National Center for Research Resources (NCRR); UAB Comprehensive Cancer Center Purpose - Excerpt: Objectives: I. Determine the effect of oral contraceptives containing low-dose synthetic estrogens and progestins on disease activity in premenopausal women with inactive, stable, or moderate systemic lupus erythematosus (SLE). II. Determine the effect of hormone replacement therapy with conjugated estrogens and progestins on disease activity in postmenopausal women with inactive, stable, or moderate SLE. Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006133;jsessionid=C86124 E234F08730F120E192C53539F4
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Role of altered CD40-Ligand gene transcription in systemic lupus erythematosus Condition(s): Lupus Erythematosus, Systemic Study Status: This study is currently recruiting patients. Sponsor(s): National Center for Research Resources (NCRR); Arthritis Foundation Purpose - Excerpt: Systemic lupus erythematosus is an often devastating autoimmune disease which affects 1 in 2,000 women in the United States. Recently, several research laboratories have reported that a protein, named CD40-ligand (CD154), is overpressed by a subset of white blood cells, called lymphocytes, in patients with lupus. Expression of CD154 appears critical to the generation of antibodies that cause disease in
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lupus. Blocking CD154 interactions in the immune system has been shown to decrease disease activity in animal models of lupus. We propose to study the regulation of CD154 in patients with lupus in hopes of inhibiting its abnormal and deleterious expression. Study Type: Observational Contact(s): Randy Q Cron, MD, Ph.D. 215-590-1844; Pennsylvania; Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, 191044318, United States; Recruiting; Randy Q Cron, M.D., Ph.D. 215-590-1844 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00008749;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Role of the Antibody Against NR2 Glutamate Receptor in Cognitive Dysfunction in Patients with Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: Cognitive dysfunction is common in patients with systemic lupus erythematosus (SLE), observed in as many as two-thirds of patients. Cognitive dysfunction of long duration or with deterioration can have a significant impact on occupational functioning of SLE patients and also compromise compliance to treatment. The pathogenesis of cognitive dysfunction in SLE patients is likely multifactorial, including vascular origin, direct neuronal damage due to autoantibodies or cytokines, metabolic effects, or effects of certain medications. More than one half of SLE patients have anti-DNA antibodies, and it was recently demonstrated that a subset of anti-DNA antibodies cross-reacts with a pentapeptide consensus sequence (residues 283-287) of the human Nmethyl-D-aspartate (NMDA) receptor NR2a and NR2b subunits and can cause excitotoxic death of neurons. NMDA receptors are important in memory function and learning, and thus such antibodies may mediate cognitive dysfunction in SLE. In this cross-sectional study, up to 60 patients with SLE may be enrolled. Participants will undergo neuropsychological testing, neuroimaging studies, and blood tests for antibody with the reactivity to the pentapeptide consensus sequence of the human NMDA receptor NR2a and NR2b subunits (anti-pentapeptide Ab). The primary objective of this study is to evaluate the association between cognitive dysfunction and serum anti-pentapeptide Ab. Magnetic resonance imaging (MRI) will be performed for evaluation of potentially confounding central nervous system (CNS) disease such as cerebral infarction, and of blood brain barrier breakdown by employing
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gadolinium enhancement. Furthermore, in participants who agree, a lumbar puncture will be performed and cerebrospinal fluid will be obtained for preliminary evaluation of the intrathecal levels of the antipentapeptide Ab associated with cognitive dysfunction. If the antipentapeptide Ab is associated with cognitive dysfunction, therapeutic interventions via NR2 receptor blockade or the blockade of the antipentapeptide Ab may be considered in a future study. Study Type: Observational Contact(s): Maryland; National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00042523;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Safety and Efficacy Study of LJP 394 (abetimus sodium) to treat lupus kidney disease Condition(s): Immunologic Diseases; Autoimmune Diseases; Systemic Lupus Erythematosus; Lupus Nephritis; Lupus Glomerulonephritis Study Status: This study is currently recruiting patients. Sponsor(s): La Jolla Pharmaceutical Company Purpose - Excerpt: The purpose of this study is to determine whether LJP 394 (abetimus sodium) is safe and effective in delaying and reducing renal flares in patients with lupus nephritis. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00035308;jsessionid=C86124 E234F08730F120E192C53539F4
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Safety of Estrogens in Lupus: Birth Control Pills Condition(s): Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); Office of Research on Women's Health (ORWH)
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Purpose - Excerpt: Safety of Estrogens in Lupus Erythematosus - National Assessment (SELENA) is a study to test whether women with systemic lupus erythematosus (SLE or lupus) can safely use estrogen. We will determine this by looking at the effects of oral contraceptives (birth control pills, also known as "the pill") on disease activity and severity in women with SLE. The results of the study will show whether it is safe for women with SLE to use the pill. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00000420;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Six month clinical research study for patients with moderate or severe dry eye syndrome Condition(s): Keratoconjunctivitis Sicca; Sjogren's Syndrome; Lupus Erythematosus, Systemic; Arthritis, Rheumatoid; Scleroderma, Systemic Study Status: This study is currently recruiting patients. Sponsor(s): Allergan Purpose - Excerpt: A six-month clinical research trial to evaluate the effectiveness of an investigational medication for the treatment of dry eye syndrome in patients that have been diagnosed with moderate to severe dry eye syndrome, an autoimmune disorder AND/OR females 65 years of age or older. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00025818;jsessionid=C86124 E234F08730F120E192C53539F4
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Study of GL701 in Men with Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): Genelabs Technologies Purpose - Excerpt: Lupus flares and other symptoms associated with systemic lupus erythematosus (SLE) may be caused by a deficiency of
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dehydroepiandrosterone (DHEA). GL701 is an investigational new drug meant to enhance DHEA levels. This study is designed to evaluate both the safety and efficacy of GL701 in male lupus patients. Phase(s): Phase III Study Type: Interventional Contact(s): Betty Quarles (650) 562-1425
[email protected]; California; Genelabs Technologies, Inc., Redwood City, California, 94063, United States; Recruiting Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00037128;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Study of Systemic Lupus Erythematosus Condition(s): Lupus Nephritis; Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This protocol will evaluate patients with systemic lupus erythematosus (SLE) and their relatives to learn more about how the disease develops and changes over time. It will also study genetic factors that make a person susceptible to SLE. Patients 10 years of age and older with known or suspected SLE and their relatives may be eligible for this study. Patients will be evaluated with a medical history and physical examination, blood and urine tests. Other procedures may include: 1. Electrocardiogram 2. 24-hour urine collection 3. Imaging studies, such as chest and joint X-rays, magnetic resonance imaging (MRI) scans, bone scans, and bone densitometry. 4. Questionnaire about the degree of disease activity, and survey of risk factors for disease complications. 5. Apheresis-Collection of plasma (fluid portion of blood) or blood cells for analysis. Whole blood is collected through a needle in an arm vein. The blood circulates through a machine that separates it into its components. The required component (plasma or cells) is removed and the rest of the blood is returned to the body through the same needle or through a second needle in the other arm. 6. Skin biopsy-Removal of a small skin sample for microscopic analysis. An area of skin is numbed with an anesthetic and a small circular portion (about 1/4 inch in diameter) is removed, using a sharp cookie cutter-type instrument. 7. Kidney, bone marrow or other organ biopsy-Removal of a small sample of organ tissue. These biopsies are done only if they can provide information useful in better understanding the disease or making
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treatment decisions. 8. Genetic studies-Collection of a blood sample for gene testing. Patients will be followed at least once a year with a brief history and physical examination and routine blood and urine tests. Some patients may be seen more often. Treatment recommendations will be offered to patients' physicians, and patients who are eligible for other research treatment studies will be invited to enroll. Participating relatives of patients will fill out a brief medical history questionnaire and provide a DNA sample (either a blood sample or tissue swab from the inside of the cheek) for genetic testing. Study Type: Observational Contact(s): Maryland; National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001372;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Study of the Predictors of the Course and Early Outcome of Patients With Systemic Lupus Erythematosus: Nature Versus Nurture Condition(s): Systemic Lupus Erythematosus Study Status: This study is currently recruiting patients. Sponsor(s): National Center for Research Resources (NCRR); UAB Comprehensive Cancer Center Purpose - Excerpt: Objectives: I. Continue yearly ascertainment visits of all patients of the established Lupus in Minority Populations: Nature vs Nurture (LUMINA) study cohort. II. Recruit into the LUMINA cohort newly diagnosed patients with systemic lupus erythematosus (SLE). III. Determine the impact of additional major histocompatibility complex (MHC) and non-MHC genetic factors not previously examined, specifically tumor necrosis factor, mannose binding protein, interleukin-1 receptor antagonist, and bcl-2, on the course and outcome of SLE. IV. Refine the assessment of those clinical and behavioral-cultural factors found to be important predictors of disease activity, damage, and functioning, thus far in these patients. V. Determine the relationships among disease activity, disease damage, and physical and mental functioning in these patients as the SLE progresses and the factors that predict them. Study Type: Observational Contact(s): see Web site below
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Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006134;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Cyclophosphamide and Fludarabine to Treat Lupus Nephritis Condition(s): Glomerulonephritis; Lupus Nephritis; Systemic Lupus Erythematosus Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: This study will test the safety and effectiveness of combination therapy with cyclophosphamide (Cytoxan) and fludarabine in treating lupus nephritis (kidney inflammation). This condition, common in patients with systemic lupus erythematosus, is caused by abnormal action of immune cells called lymphocytes against the kidneys. Left untreated, severe cases can result in loss of kidney function. The current treatment of choice-intermittent high doses (pulses) of cyclophosphamide-does not work in all patients and causes infertility in many women. The rate of infertility in men is not known. This study will examine whether fludarabine can safely be given with significantly lower doses of cyclophosphamide, and if this combination controls kidney inflammation. Patients 18 years of age and older with severe lupus nephritis (called proliferative lupus nephritis) may be eligible for this study. Candidates will have a history and physical examination; blood and urine tests; chest X-ray; electrocardiogram; cancer screening that may include a Pap smear, mammogram, rectal examination, PSA testing, and sigmoidoscopy. Participants will be divided into one of the following treatment groups: Group 1-Patients undergo three treatment cycles of cyclophosphamide, taken by mouth, and fludarabine, injected subcutaneously (under the skin). Patients receive both drugs on day 1 of the cycle, and fludarabine alone on days 2 and 3. This regimen is repeated once every 5 weeks for three cycles. Group 2-Same as for Group 1, except fludarabine injections are given intravenously (through a vein) for the second treatment cycle. Patients in this group have frequent blood sampling during the first and second treatment cycles to monitor blood levels of the drug. Samples are collected before the first injection is given and at 0.5, 1, 1.5, 2, 4, 8, 24 and 48 hours after the third injection. A total 12 tablespoons of blood is drawn over a 2-month period. All patients will have blood drawn once or twice a week during the first two cycles and then less frequently to monitor blood counts. Some patients will have the following additional procedures to test the effects of treatment on
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lymphocytes: 1. Blood sample collection 2. Bone marrow aspiration-The skin over the hip bone is cleaned and a local anesthetic is injected into the outer covering of the bone. Bone marrow is suctioned through the needle into an attached syringe. The procedure is done before treatment begins, at the end of treatment, and 6 months after treatment. 3. Tonsillar biopsyThe tonsils are numbed with a local anesthetic and 1 to 4 pieces of tissue are removed using special forceps. The procedure is done before treatment begins, at the end of treatment, and 6 months after treatment. 4. Magnetic resonance imaging (MRI) of the abdomen-The patients lies on a table in a narrow cylinder (the MRI scanner) containing a strong magnetic field, which is used to create images of parts of the body in small section views. Patients will be followed for at least 24 months to monitor late side effects and the response to treatment. Phase(s): Phase I Study Type: Interventional Contact(s): Maryland; National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Patient Recruitment and Public Liaison Office 1-800411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001676;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Drug Therapy in Lupus Nephropathy Condition(s): Nephrotic Syndrome; Systemic Lupus Erythematosus Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Purpose - Excerpt: Studies have shown that up to 26% of patients with systemic lupus erythematoses nephritis may suffer from membranous lupus nephropathy. The disease is characterized by high levels of protein in the urine and may eventually lead to kidney failure. This study will evaluate the effectiveness and toxic effects of immunosuppressive drug therapy in patients with membranous lupus nephropathy over a 12 month period. The major goal of this therapy is to decrease protein losses and ultimately prevent kidney failure. Patients enrolled in the study will undergo a routine history and physical examination. In addition, several diagnostic tests will be conducted including; chest x-ray ECG, blood and urine laboratory tests. Patients will be divided and grouped according to the severity of their disease as shown by kidney function. Each group will
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then randomly be subcategorized by different treatment plans. Each treatment plan will made up of immunosuppressive medications including prednisone, cyclophosphamide, cyclosporin A, and combinations of these drugs. Patients will receive the medications as directed by the study. The study will last 12 months and require patients to be admitted for two to five days before the study begins and once the study is completed. Patients will be followed as outpatients throughout the 12 month study. Phase(s): Phase II Study Type: Interventional Contact(s): Maryland; National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), 9000 Rockville Pike Bethesda, Maryland, 20892, United States; Patient Recruitment and Public Liaison Office 1-800411-1222
[email protected]; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001212;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Psychoeducational Approach to Improve Health in Lupus Condition(s): Systemic Lupus Erythematosus Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: We will study the relationships among patient/partner communication, social support, and self-efficacy (a person's belief in the ability to manage his or her disease) as they affect the health of people with systemic lupus erythematosus (SLE, or lupus) over time. We are assigning 150 people with lupus and their partners to either (1) receive counseling to improve self-efficacy, partner support, and patient/partner problem solving or (2) see an informational film about lupus. We will follow study participants for 12 months to find out about their physical and mental health, disease activity, beliefs that they can take steps that help them feel better, coping, social support, and couples communication. Phase(s): Phase II Study Type: Interventional Contact(s): Massachusetts; Brigham & Women's Hospital, Boston, Massachusetts, 02115, United States. Study chairs or principal investigators: Lawren H. Daltroy, Dr.P.H., Principal Investigator; Brigham & Women's Hospital
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Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00000417;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Safety of Estrogens in Lupus: Hormone Replacement Therapy Condition(s): Systemic Lupus Erythematosus Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); Office of Research on Women's Health (ORWH) Purpose - Excerpt: Safety of Estrogens in Lupus Erythematosus - National Assessment (SELENA) is a study to test whether postmenopausal women with systemic lupus erythematosus (SLE, or lupus) can safely use the hormone estrogen. In this part of the study, we will look at the effects of estrogen replacement therapy on the activity and severity of disease in women with SLE. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00000419;jsessionid=C86124 E234F08730F120E192C53539F4
·
Serologically Active, Clinically Stable Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Purpose - Excerpt: The first part of this study will use the database of a large, ongoing NIH-sponsored lupus study, Safety of Estrogen in Lupus Erythematosus National Assessment. We will examine the levels of a blood protein known as C3a in a series of patient blood samples to see if C3a levels predict lupus flares or are better than other blood tests, and therefore should be used more widely in managing lupus. In the second part of the study we will add or increase prednisone treatment on the basis of abnormalities in blood tests for C3a and dsDNA antibodies. Early treatment based on increases in C3a and dsDNA antibodies, before the patient develops physical signs of disease, may reduce lupus flares and, ultimately, the patient's total steroid exposure. We will follow study participants for 1 year on a monthly basis and do full physical
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examinations and laboratory evaluations. If C3a and dsDNA antibody levels are increased significantly above baseline levels while a patient is clinically stable, we will give the patient either prednisone or an inactive pill (placebo) for 1 month. We will follow these patients monthly to compare how often lupus flares occur in the two groups. This approach could provide a novel method of preventing lupus flares, using C3a as a sensitive predictor of flare. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00000421;jsessionid=C86124 E234F08730F120E192C53539F4 ·
DHEA Treatment for Sjogren's Syndrome Condition(s): Lacrimal Apparatus Disease; Salivary Gland Disease; Sjogren's Syndrome; Xerostomia Study Status: This study is completed. Sponsor(s): National Institute of Dental and Craniofacial Research (NIDCR) Purpose - Excerpt: This study will evaluate the effectiveness of the male hormone dehydroepiandrosterone (DHEA) in treating Sjogren's syndrome. This autoimmune disorder, in which the immune system attacks the salivary glands and tear glands, affects primarily women. Patients' eyes and mouth become drier over time, and can lead to problems such as serious tooth decay and eye irritations. Sex hormones seem to influence the immune response and may help decrease disease severity. DHEA has benefited some patients with two other autoimmune diseases, rheumatoid arthritis and systemic lupus erythematosus. Women 18 to 75 years of age with Sjogren's syndrome may be eligible for this 7-month study. At the initial visit, candidates will have a physical examination, routine blood and urine tests and eye and dental examinations, including a test to measure saliva production for screening purposes and to establish baseline values for participants. Those enrolled in the study will be randomly assigned to take either DHEA or placebo (look-alike tablet with no active ingredient) once a day for 6 months and will be monitored with follow-up visits at months 1, 3, 6 and 7. Physical examination, blood tests and urinalysis will be repeated at months 1, 3, 6 and 7; saliva will be collected at months 3, 6 and 7; and eyes will be examined at 3 and 6 months. Because hormone changes may have both
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physical and emotional effects, patients will be asked questions about their mood, symptoms and side effects of treatment. It is not known if Sjogren's syndrome is associated with osteoporosis (bone thinning), but since this condition occurs in other autoimmune disorders, patient's bone density will be measured at the first visit, and blood drawn at 3 and 6 months will be tested for various substances associated with changes in bone density. A 24-hour urine collection at the first visit and later urine tests will also be tested for substances associated with bone thinning. Phase(s): Phase II Study Type: Interventional Contact(s): Maryland; National Institute of Dental And Craniofacial Research (NIDCR), 9000 Rockville Pike Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001598;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Epidemiologic Study of Reproductive Outcome in Women with Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is completed. Sponsor(s): National Center for Research Resources (NCRR); National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); Northwestern University Purpose - Excerpt: Objectives: I. Evaluate whether pregnancy is an independent risk factor that affects disease activity in women with systemic lupus erythematosus. II. Evaluate whether maternal disease activity is a risk factor for adverse pregnancy outcome. Study Type: Observational Contact(s):. Study chairs or principal investigators: Rosalind RamseyGoldman, Study Chair; Northwestern University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004663;jsessionid=C86124 E234F08730F120E192C53539F4
·
Lupus Cohort--Thrombotic Events and Coronary Artery Disease Condition(s): Cardiovascular Diseases; Coronary Disease; Thrombosis; Heart Diseases; Lupus erythematosus, systemic Study Status: This study is completed.
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Sponsor(s): National Heart, Lung, and Blood Institute (NHLBI) Purpose - Excerpt: To study longitudinally the incidence, pathogenesis, and risk factors for thrombotic events and coronary artery disease in a cohort of patients with systemic lupus erythematosus (SLE). Study Type: Epidemiology Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00005436;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Phase II Pilot Study of Cytarabine for Refractory Systemic Lupus Erythematosus Condition(s): Lupus Erythematosus, Systemic Study Status: This study is completed. Sponsor(s): National Center for Research Resources (NCRR); University of Michigan Purpose - Excerpt: Objectives: I. Evaluate the toxicity of cytarabine in patients with refractory systemic lupus erythematosus. II. Evaluate objective disease parameters, including serum complement levels, antiDNA antibody titers, sedimentation rate, and the systemic lupus activity measure in these patients. Phase(s): Phase II Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004643;jsessionid=C86124 E234F08730F120E192C53539F4
·
Phase II Study of Long-Term Dehydroepiandrosterone for Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is completed. Sponsor(s): National Center Northwestern University
for
Research
Resources
(NCRR);
Purpose - Excerpt: Objectives: I. Evaluate the long-term safety and tolerance of a synthetic formulation of dehydroepiandrosterone, GL701, in patients with systemic lupus erythematosus who have completed a prior GL701 protocol.
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Phase(s): Phase II Study Type: Interventional Contact(s):. Study chairs or principal investigators: Rosalind RamseyGoldman, Study Chair; Northwestern University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004665;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Phase II/III Randomized, Double-Blind, Placebo-Controlled Study of Dehydroepiandrosterone in Women with Mild to Moderate Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is completed. Sponsor(s): National Center Northwestern University
for
Research
Resources
(NCRR);
Purpose - Excerpt: Objectives: I. Evaluate the safety and efficacy of synthetic dehydroepiandrosterone (GL701) in women with prednisonedependent systemic lupus erythematosus. II. Describe the pharmacokinetics of GL701. Phase(s): Phase II; Phase III Study Type: Interventional Contact(s):. Study chairs or principal investigators: Rosalind RamseyGoldman, Study Chair; Northwestern University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004795;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Phase III Randomized, Double-Blind, Placebo-Controlled Study of Dehydroepiandrosterone in Women with Active Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is completed. Sponsor(s): National Center Northwestern University
for
Research
Resources
(NCRR);
Purpose - Excerpt: Objectives: I. Evaluate the safety and efficacy of synthetic dehydroepiandrosterone, GL701, in women with active systemic lupus erythematosus. Phase(s): Phase III
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Study Type: Interventional Contact(s):. Study chairs or principal investigators: Rosalind RamseyGoldman, Study Chair; Northwestern University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004662;jsessionid=C86124 E234F08730F120E192C53539F4 ·
Study of Individualized Instruction versus Pamphlet in Systemic Lupus Erythematosus Condition(s): Systemic Lupus Erythematosus Study Status: This study is completed. Sponsor(s): National Center for Research Resources (NCRR); Virginia Commonwealth University Purpose - Excerpt: Objectives: I. Evaluate an educational program that has been pretested for cultural appropriateness and literacy requirements in patients with systemic lupus erythematosus (SLE). II. Assess the impact of this educational program on patients with SLE, with an emphasis on recognizing cardinal symptoms, coping with fatigue, regulating medications, and communicating with the physician. Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004756;jsessionid=C86124 E234F08730F120E192C53539F4
Benefits and Risks18 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: ·
A new treatment could be more effective than the current treatment for lupus. Although only half of the participants in a clinical trial receive the
This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f2 91. 18
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experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over. ·
If the treatment is effective, then it may improve health or prevent diseases or disorders.
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Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over.
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People who take part in trials contribute to scientific discoveries that may help other people with lupus. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent
Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial's risks and benefits, the researcher’s expectations of you, and your rights as a patient.
What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital's Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully
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monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient's Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: ·
Information on all known risks and benefits of the treatments in the study.
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Know how the researchers plan to carry out the study, for how long, and where.
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Know what is expected of you.
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Know any costs involved for you or your insurance provider.
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Know before any of your medical or personal information is shared with other researchers involved in the clinical trial.
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Talk openly with doctors and ask any questions.
After you join a clinical trial, you have the right to: ·
Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study.
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Receive any new information about the new treatment.
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Continue to ask questions and get answers.
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Maintain your privacy. Your name will not appear in any reports based on the study.
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Know whether you participated in the treatment group or the control group (once the study has been completed). What about Costs?
In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should
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find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don't have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: ·
What is the purpose of the clinical trial?
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What are the standard treatments for lupus? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment?
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What tests and treatments will I need? Will I need surgery? Medication? Hospitalization?
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How long will the treatment last? How often will I have to come back for follow-up exams?
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What are the treatment's possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects?
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Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long?
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How will my health be monitored?
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Where will I need to go for the clinical trial? How will I get there?
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How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover?
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Will I be able to see my own doctor? Who will be in charge of my care?
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Will taking part in the study affect my daily life? Do I have time to participate?
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How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge?
Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has
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developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “lupus” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: ·
For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/
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For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html
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For trials on arthritis, musculoskeletal and skin diseases, visit newly revised site of the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health: http://www.niams.nih.gov/hi/studies/index.htm
General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
A Guide to Patient Recruitment : Today's Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001),
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CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna ·
A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna
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The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna
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The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna
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Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna
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Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna
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Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Aplasia: Lack of development of an organ or tissue, or of the cellular products from an organ or tissue. [EU] Aspiration: The act of inhaling. [EU] Atrioventricular: Pertaining to an atrium of the heart and to a ventricle. [EU] Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine.
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[EU]
Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Conjugated: Acting or operating as if joined; simultaneous. [EU] Coronary: Encircling in the manner of a crown; a term applied to vessels; nerves, ligaments, etc. The term usually denotes the arteries that supply the heart muscle and, by extension, a pathologic involvement of them. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Gadolinium: Gadolinium. An element of the rare earth family of metals. It has the atomic symbol Gd, atomic number 64, and atomic weight 157.25. Its oxide is used in the control rods of some nuclear reactors. [NIH] Hepatitis: Inflammation of the liver. [EU] Hypersensitivity: A state of altered reactivity in which the body reacts with an exaggerated immune response to a foreign substance. Hypersensitivity reactions are classified as immediate or delayed, types I and IV, respectively, in the Gell and Coombs classification (q.v.) of immune responses. [EU] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infertility: The diminished or absent ability to conceive or produce an offspring while sterility is the complete inability to conceive or produce an offspring. [NIH] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Mobilization: The process of making a fixed part or stored substance mobile, as by separating a part from surrounding structures to make it accessible for an operative procedure or by causing release into the circulation for body use of a substance stored in the body. [EU] Nephropathy: Disease of the kidneys. [EU] Nephrotic: Pertaining to, resembling, or caused by nephrosis. [EU] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of
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a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Osteoarthritis: Noninflammatory degenerative joint disease occurring chiefly in older persons, characterized by degeneration of the articular cartilage, hypertrophy of bone at the margins, and changes in the synovial membrane. It is accompanied by pain and stiffness, particularly after prolonged activity. [EU] Outpatients: Persons who receive ambulatory care at an outpatient department or clinic without room and board being provided. [NIH] Pharmacokinetics: The action of drugs in the body over a period of time, including the processes of absorption, distribution, localization in tissues, biotransformation, and excretion. [EU] Plasmapheresis: Procedure whereby plasma is separated and extracted from anticoagulated whole blood and the red cells retransfused to the donor. Plasmapheresis is also employed for therapeutic use. [NIH] Pulmonary: Pertaining to the lungs. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Reconstitution: 1. a type of regeneration in which a new organ forms by the rearrangement of tissues rather than from new formation at an injured surface. 2. the restoration to original form of a substance previously altered for preservation and storage, as the restoration to a liquid state of blood serum or plasma that has been dried and stored. [EU] Rectal: Pertaining to the rectum (= distal portion of the large intestine). [EU] Refractory: Not readily yielding to treatment. [EU] Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Sigmoidoscopy: Endoscopic examination, therapy or surgery of the sigmoid flexure. [NIH] Thalidomide: A pharmaceutical agent originally introduced as a nonbarbiturate hypnotic, but withdrawn from the market because of its known tetratogenic effects. It has been reintroduced and used for a number of immunological and inflammatory disorders. Thalidomide displays
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immunosuppresive and anti-angiogenic activity. It inhibits release of tumor necrosis factor alpha from monocytes, and modulates other cytokine action. [NIH]
Thrombosis: The formation, development, or presence of a thrombus. [EU] Tolerance: 1. the ability to endure unusually large doses of a drug or toxin. 2. acquired drug tolerance; a decreasing response to repeated constant doses of a drug or the need for increasing doses to maintain a constant response. [EU]
Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]
Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU]
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PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL
ABOUT PART II In Part II, we introduce you to additional resources and advanced research on lupus. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on lupus. In Part II, as in Part I, our objective is not to interpret the latest advances on lupus or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with lupus is suggested.
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CHAPTER 4. STUDIES ON LUPUS Overview Every year, academic studies are published on lupus or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on lupus. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on lupus and teach you how to keep current on new studies as they are published or undertaken by the scientific community.
The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and lupus, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the
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format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “lupus” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: ·
Research Advances in Systemic Lupus Erythematosus Source: Journal of the American Medical Association. JAMA. 285(5): 650651. February 7, 2001. Summary: This journal article provides health professionals with information on research advances in systemic lupus erythematosus (SLE). This multisystem autoimmune disease with a significant genetic component to susceptibility involves both humoral and cellular aspects of the innate and acquired immune system. Deficiencies of complement and other opsonins, genetic variants of immunoglobulin G and C reactive protein receptors, and inflammatory cytokine promoter variants have been implicated as components of genetic susceptibility. SLE occurs worldwide and affects women more than men and African Americans and Hispanics more than other ethnic groups. The disease is characterized by autoantibodies with a spectrum of specificities that participate in disease pathogenesis. Some environmental risk factors are known, and identification of specific genetic factors promises to define new molecular targets for therapy. Broad, nonspecific immunosuppression will be replaced by early, selective, and individualized intervention. Assessment of individual genetic portfolios with gene array technology, combined with advances in knowledge about exogenous stimuli, will facilitate prevention of SLE. Mortality rates will decline, and insights into therapy may apply to other autoimmune conditions. 6 references.
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Systemic Lupus Erythematosus: Guidelines for Control Source: Consultant. 40(2): 332-334. February 2000. Summary: This journal article provides health professionals with highlights from guidelines for the referral and management of systemic lupus erythematous (SLE) recently published by the American College of Rheumatology. The guidelines focus on the epidemiology, diagnosis, and treatment of SLE. They also include criteria for specialist referral and collaboration with a specialist in long term care. Most cases of SLE involve women of child bearing age. Symptoms can involve almost any
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area of the body, and SLE should be suspected in any patient who has disease manifestations that affect two or more organ systems. Serologic tests are frequently used to help confirm the diagnosis, including tests for antinuclear antibodies, antibodies to double stranded DNA, and antibodies to the Smith antigen. Treatment for mild SLE involves pharmacologic therapy with agents such as topical sunscreens, topical and oral corticosteroids, nonsteroidal antiinflammatory drugs, and antimalarial drugs. Therapeutic options for serious SLE include high dose corticosteroids and immunosuppressive or cytotoxic agents. All patients who have SLE require lifelong monitoring, and those who have moderate or severe disease need a specialist's supervision. The frequency of the evaluations depends on the severity of the patient's condition. Patients may obtain information and support from various organizations. 2 tables and 7 references. ·
Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): i-xi,199-413. May 2000. Summary: This journal provides health professionals with information on new advances in the pathogenesis of systemic lupus erythematosus (SLE), risk factors for and management of complications of SLE, and approaches to treating SLE. The journal begins with a review of the Hopkins Lupus Cohort, a decade long prospective study. This is followed by an article that provides an apoptosis centered hypothesis for the initiation and propagation of SLE. The focus of the next article is on genetics, including the goals of genetic analysis of SLE, the strategies to define genetic susceptibility factors in SLE, and current understanding of the genetics of SLE. The next article summarizes evidence on the clinical and subclinical spectra of premature atherosclerosis in SLE. This is followed by an article that provides information on the epidemiology, diagnosis, and management of patients with SLE and osteonecrosis. The sixth article discusses the mechanisms of glucocorticoid induced osteoporosis in SLE and outlines prevention and treatment strategies. The focus of the next article is on the clinical features, diagnosis, and management of antiphospholipid syndrome in SLE. This is followed by an article that reviews the physiology of dehydroepiandrosterone (DHEA), the rationale for its use as a pharmacologic agent in SLE, the clinical results obtained with DHEA in patients with SLE, and expected and future developments regarding DHEA. The next article reviews the most recent studies on the use of cyclophosphamide in various manifestations of SLE and addresses issues related to dose regimens and clinically relevant toxicities. The focus of the subsequent article is on the
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use of hematopoietic stem cell transplantation to treat SLE. The final article summarizes various therapies under study to treat. 21 figures, 6 tables, and numerous references. ·
Apoptosis in Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 215-227. May 2000. Summary: This journal article provides health professionals with information on an apoptosis centered hypothesis for the initiation and propagation of systemic lupus erythematosus (SLE), a heterogeneous and complex group of disorders of uncertain cause. Recent studies have suggested that abnormalities in the apoptotic cell death process may have a role in the initiation and propagation of this disease spectrum by altering the generation and cleavage of antigens and through abnormalities in immunoregulation. The article reviews studies on the clustering and concentration of autoantigens in and on the surface blebs of apoptotic cells, modifications of antigen structure during certain forms of apoptotic death, and abnormalities in apoptotic cell clearance in humans with SLE and in certain animal models. In addition, the article presents a comprehensive model of systemic autoimmunity. In this model, autoantigens are clustered and concentrated in the surface blebs of apoptic cells where they are modified by apoptosis specific proteolysis and phosphorylation. When this event occurs in a genetically susceptible individual, involves a microenvironment containing high concentrations of the targeted antigens, is proimmune in nature, and allows suprathreshold concentrations of antigen with nontolerized structure to enter the major histocompatibility complex class II processing pathway, a primary immune response directed against the nontolerized structure is initiated. Once the primary immune response to apoptotic antigens is initiated, other apoptotic events may stimulate the secondary immune response with less stringency, resulting in flares. 3 figures and 66 references. (AA-M).
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Genetics of Systemic Lupus Erythematosus: Clinical Implications Source: Rheumatic Disease Clinics of North America. 26(2): 229-256. May 2000. Summary: This journal article provides health professionals with information on the genetics of systemic lupus erythematosus (SLE), focusing on the goals of genetic analysis of SLE, the strategies to define the genetic susceptibility factors in SLE, and current understanding of the genetics of SLE. The traditional goal of genetic analysis is to identify the single gene implicated in the disease. SLE is generally a polygenic
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disorder with contributions from multiple genes. Recent estimates have indicated that over 100 genes may be implicated in the SLE disease process. In polygenic disorders, genetics are likely to provide information on etiopathogenesis. The main methods of identifying genetic susceptibility factors in polygenic disorders are association studies and linkage analysis. Association studies examine the frequency of mutation or polymorphism in the affected population and compare the frequency to that seen in a matched control population. The basis of linkage analysis is the exploitation of highly polymorphic minisatellites scattered throughout the genome. The genetic factors identified in SLE to date include genes known to affect immune complex clearance, genes implicated in tolerance, major histocompatibility complex genes, and genes regulating inflammation. The article reviews research on these factors and highlights the development of new biologic strategies through human and murine studies. 3 tables and 190 references. (AA-M). ·
Premature Atherosclerosis in Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 257-278. May 2000. Summary: This journal article provides health professionals with information on current evidence concerning the clinical and subclinical spectra of premature atherosclerosis in systemic lupus erythematosus (SLE). Topics include the clinical problems of premature atherosclerosis, studies on the prevalence of subclinical atherosclerotic disease, studies on factors associated with the development of coronary artery disease (CAD) in SLE, and the screening and prevention of CAD in patients with SLE. SLE is associated with at least a fivefold increased risk of CAD and it appears to eliminate a woman's premenopausal protection against CAD. Subclinical disease can be identified in up to 40 percent of patients. The pathogenesis of atherosclerosis in this context appears to be a complex interaction of factors associated with the disease, its therapy, and traditional risk factors. Hypercholesterolemia is predictive of future CAD events. In addition, SLE appears to be a strong risk factor for CAD over and above the effect of known, traditional CAD risk factors. An aggressive approach to management of traditional CAD risk factors in patients with SLE is likely to have a major impact on morbidity and mortality in this population. Therefore, patients must be educated about this issue. Clinicians who care for patients with SLE also need to assume a primary role in screening and coordinating the management of CAD risk factors in these high risk patients. 1 figure, 1 table, and 75 references. (AA-M).
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Management of Osteonecrosis in Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 279-309. May 2000. Summary: This journal article provides health professionals with information on the epidemiology, diagnosis, and management of patients with systemic lupus erythematosus (SLE) and osteonecrosis (ON). ON of the femoral head is common in patients who have SLE. The effects are magnified because these patients commonly have multiple other joints involved in addition to the hip. Risk factors for ON in patients who have SLE include prednisolone therapy with doses greater than 20 milligrams a day, evidence of end organ effect of corticosteroid use, certain pathophysiologic variables, and altered coagulability. The primary observation in the ON diagnosis is a deep pain that is localized to the bone. Radiographic evaluation should begin with standard radiographs of all symptomatic joints. Osteonecrotic lesions can be divided radiographically into precollapse and postcollapse. Magnetic resonance imaging has been found to be 99 percent sensitive and specific for ON. In patients with suspected multiple joint involvement, bone scanning has been suggested as a screening method. Early diagnosis is important for medical and surgical management to try to avoid total joint replacements in this young patient population. Various nonoperative and operative treatments are available for managing ON. The conservative approach can be divided into modification of activity with restricted weight bearing, stimulation of repair with ultrasound or electric signals, and pharmaceutical treatment. Surgical methods of treating femoral heads with precollapse disease include core decompression, osteotomy, nonvascularized bone grafting, and vascularized bone grafting. Postcollapse disease may be treated with limited femoral resurfacing or total hip arthroplasty. In the future, pharmacologic agents and growth and differentiation factors may be effective in the early treatment of this disease and may lead to more successful outcomes with surgical options. 13 figures and 135 references. (AA-M).
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Steroid-Induced Osteoporosis in Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 311-329. May 2000. Summary: This journal article provides health professionals with information on the mechanisms of glucocorticoid induced osteoporosis in systemic lupus erythematosus (SLE) and outlines strategies for prevention and treatment. The patient with SLE is at considerable risk of osteoporosis because of the inflammatory disease itself, its consequences,
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and its treatments. Risk factors and mechanisms for osteoporosis in SLE include environmental factors, hormonal factors, the effects of inflammation, renal disease, and medications used to treat SLE. Because of their extensive use, glucocorticoids are thought to be the most frequent cause of drug induced osteoporosis and may be responsible for much of the bone loss in SLE. Glucocorticoids predominantly affect trabecular bone and the cortical rim of the vertebral body, but over time, the cortex of long bones also becomes susceptible to the demineralizing effects of these drugs. Mechanisms of steroid induced osteoporosis include abnormalities of gonadal function, mineral metabolism, and bone cell function, and steroid effects on local skeletal growth factors and on muscles. Assessment of the patient with SLE may involve determining bone mineral density and measuring baseline serum levels of vitamin D1 and osteocalcin, as well as urinary calcium excretion and pyridinoline cross links. Calcium, vitamin D, and a weightbearing program are suitable first line measures. Thiazides are useful for the glucocorticoid treated patient with hypercalciuria. Unless otherwise contraindicated, hormone replacement therapy should be used in patients who are deficient in sex hormones. If bone loss continues despite these therapies, antiresorptive therapies are recommended. Therapies under investigation include parathyroid hormone, ipriflavone, growth hormone, and insulin like growth factor. 120 references. (AA-M). ·
Antiphospholipid (Hughes) Syndrome in Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 331-348. May 2000. Summary: This journal article uses a question and answer format to provide health professionals with information on the clinical features, diagnosis, and management of antiphospholipid syndrome (APS) in systemic lupus erythematosus (SLE). APS occurs in approximately 30 percent of patients who have SLE. Clinical features and antiphospholipid antibody (aPL) specificities are similar between the primary and secondary forms of APS. Major features of APS include thrombosis, cytopenias, recurrent pregnancy loss, and cardiac valve lesions. The clinical course of the secondary syndrome is independent of the activity and severity of lupus, but the presence of APS worsens the prognosis. Lupus anticoagulant and anticardiolipin antibody tests confirm APS. Preliminary classification criteria consider that APS is present when one or more clinical and one or more laboratory criteria occur in the same patient. The differential diagnosis of APS includes autoimmune diseases, malignancies, drug induced disease, infectious diseases, and vasculitis.
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Treatment for APS remains empirical and directed at coagulation and immune mechanisms because of the limited amount of controlled prospective data. There is strong evidence that patients with aPL associated thrombosis are subject to recurrences and require prophylactic therapy. The treatment of choice for recurrent fetal loss is anticoagulation with heparin. 85 references. (AA-M). ·
Dehydroepiandrosterone in Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 349-362. May 2000. Summary: This journal article provides health professionals with information on the use of the adrenal androgen dehydroepiandrosterone (DHEA) in the treatment of systemic lupus erythematosus (SLE). DHEA has hormonal and immunomodulatory properties that suggest possible benefits for patients with SLE. The article reviews the physiology of DHEA and presents the rationale for its use as a pharmacologic agent in SLE. The main reasons for considering this agent include the following: Androgens might favorably affect the clinical expression of SLE, DHEA levels are low among patients with SLE, DHEA has immunomodulatory effects, and DHEA is beneficial in the NZB/NZW mouse model of SLE. In addition, the article summarizes the clinical results obtained with DHEA in patients with SLE. A small controlled trial has suggested overall clinical benefits. A large multicenter trial has pointed to a steroid sparing effect for DHEA. Other clinical studies have suggested possible benefits for bone metabolism and cognitive function. Side effects include acne and a lowering of high density lipoprotein cholesterol. The article concludes with a discussion of expected and future developments regarding DHEA. 3 figures and 39 references. (AA-M).
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Hematopoietic Stem Cell Transplantation for Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 377-387. May 2000. Summary: This journal article provides health professionals with information on the use of hematopoietic stem cell transplantation (HSCT) to treat systemic lupus erythematosus (SLE). Most allogenic HSCTs are from a human leukocyte antigen matched sibling donor. Bone marrow from the donor is infused into the patient following completion of a myeloablative preparative regimen. Autologous HSCT involves removal, cryopreservation, and reinfusion of hematopoietic stem cells following myeloablative therapy. The source of autologous stem cells can be either the bone marrow or peripheral blood progenitors. Many institutions
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throughout the world are conducting clinical studies using immunoablative therapy followed by HSCT for the treatment of SLE. Interpretation of these studies will be complicated by the differences in patient selection, conditioning regimens, and methods of stem cell collection. A major concern with this approach is that autoreactive effector cells will be reinfused with the autologous graft. The recent demonstration that immunoablative therapy can be safely delivered without the need for stem cell rescue offers a possible way to circumvent this problem. Early results using immunoablative therapy, with or without stem cell rescue, are encouraging; however, longer followup and additional patients are needed to validate this approach. 51 references. (AA-M). ·
New Therapies for Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 389-406. May 2000. Summary: This journal article provides health professionals with information on various new therapies under study for the treatment of SLE. New therapies have gained increased attention, as demonstrated by a growing number of new modalities being studied. This increase is partly the result of the efforts of various groups to establish standard measurable end points for disease response and provide guidance in the design of clinical studies. The article describes various new modalities, including novel biologic agents that target specific immunologic responses and more traditional pharmaceutical agents. Biologic agents have been designed to interfere with T cell activation, T cell to B cell collaboration, anti-dsDNA antibody production, anti-dsDNA Ab complex deposition, complement activation and deposition, and cytokine activation and modulation. Pharmaceutical interventions include immunomodulators such as thalidomide, AS101, 2cholordeoxyadenosine, mycophenolate mofetil, bindarit, and methimazole, and sex hormones such as dehydroepiandrosterone, selective estrogen receptor modulators, and bromocriptine. The article explains the mechanism of action of these new therapies and highlights the most recent research performed to characterize their safety and efficacy. 1 table and 105 references. (AA-M).
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Update on Cyclophosphamide for Systemic Lupus Erythematosus Source: Rheumatic Disease Clinics of North America. 26(2): 363-375. May 2000. Summary: This journal article provides health professionals with information on the most recent studies on the use of cyclophosphamide
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in various manifestations of systemic lupus erythematosus (SLE) and addresses issues related to dose regimens and clinically relevant toxicities. Over the past decade, cyclophosphamide has assumed an increasingly prominent role in the management of severe, life threatening manifestations of SLE. Intermittent, intravenous pulse cyclophosphamide has become the standard of treatment for diffuse proliferative lupus nephritis, and there is now substantial clinical literature to suggest an indication for most other forms of serious lupus affecting major organ systems, in particular lupus vasculitis and acute central nervous system manifestations. Cyclophosphamide is typically given with corticosteroids either orally or intravenously. Although there is no clear evidence that oral and intravenous regimens differ in clinical efficacy, oral cyclophosphamide has been largely replaced by intermittent intravenous bolus therapy in clinical practice. The most commonly used intravenous regimen consists of monthly infusions for 6 months followed by infusions every several months. The most common side effects of cyclophosphamide treatment are nausea and vomiting. The most common potentially serious toxicities of cyclophosphamide include infection, gonadal failure, bladder complications, and malignancy. Recent clinical investigations of cyclophosphamide in SLE have focused on drug combinations, relapses after treatment, combined apheresis cyclophosphamide therapy, and higher dose immunoablative strategies. 1 table and 78 references. (AA-M).
Federally-Funded Research on Lupus The U.S. Government supports a variety of research studies relating to lupus and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.19 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally-funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit the CRISP Web site at http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket. You can perform targeted searches by various criteria including geography, date, as well as topics related to lupus and related conditions.
19 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH).
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For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally-funded studies use animals or simulated models to explore lupus and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for lupus: ·
Project Title: ACE Inhibitors Autoantibody Production
in
Lupus
Nephritis--Tgfb
and
Principal Investigator & Institution: Singh, Ram R.; Associate Professor; Children's Hospital Med Ctr (Cincinnati) 3333 Burnet Ave Cincinnati, Oh 45229 Timing: Fiscal Year 2001; Project Start 5-MAR-2001; Project End 8-FEB2006 Summary: Angiotensin-converting enzyme inhibitors (ACEIs), such as captopril, are widely used to control hypertension in patients who have chronic renal disease. ACEIs improve renal function in patients with chronic renal disease, however, than would be expected from their suppression of hypertension. ACEI-induced improvement in renal function is associated with decreased renal TGF-beta expression and matrix deposition. We anticipate that ACEIs may have a similar effect on TGF-beta production, renal fibrosis and end stage renal disease in patients with lupus. However, because TGF-beta can inhibit T and B cell activation and auto-antibody productions, an ACEI-induced decrease in TGF-beta may exacerbate auto-antibody-mediated disease in lupus by enhancing auto-antibody production. Consequently, this proposal will explore potential therapeutic and damaging effects of ACEIs in SLE, inflammatory component of lupus nephritis, its continued presence enhances renal matrix deposition and fibrosis. To test this hypothesis we will: 1) evaluate autoantibody responses and renal disease in lupus-prone mice treated with ACEIs; and 2) generate and characterize mice that have kidney-specific deletion of the Tgfb1 gene. These mice will be used in future to determine the effect of TGF-beta deletion on lupus nephritis. Lupus-prone and control mice will be treated with captopril or a control anti-hypertensive agent; the effect on blood pressure, renal functions, renal histology, renal immune and collagen deposition will be determined. These changes will be correlated with TGF-beta expression in kidneys and spleens, and serum auto-antibodies. We will then generate mice that have renal-specific Tgfb1 gene deletion, and characterize their phenotype, specifically for any inflammatory changes in kidneys and other organs. The broad objectives of this proposal are to
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understand the role of TGF- beta in the pathogenesis of lupus nephritis, to explore how manipulation of in vivo TGF-beta can influence lupus, and to elucidate the mechanism and clinical utility of ACEIs in lupus. Delineation of pathways that cause matrix deposition in kidneys, but do not affect T and B cell activation, may lead to treatment strategies that improve end stage renal disease in SLE. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Delineation of Genetic Pathways to Lupus Pathogenesis Principal Investigator & Institution: Liu, Kui; Microbiology; University of Texas Sw Med Ctr/Dallas Southwestern Medical Ctr/Dallas Dallas, Tx 75390 Timing: Fiscal Year 2001; Project Start 1-SEP-2001 Summary: (provided by the applicant): Systemic lupus erythematosus (SLE) is characterized by the presence of anti-nuclear antibodies (ANA) directed against naked DNA and entire nucleosomes. Development of congenic mouse models carrying lupus susceptibility gene intervals has provided powerful tools for studying the mechanism of lupus pathogenesis. Sle1 mediates the loss of tolerance to nuclear antigens and the initiation of autoimmunity. Our recent study demonstrated that Sle1 mediates the abnormal expression of several genes, including the c-myc protooncogene, that control B-cell activation and proliferation. We hypothesize that autoreactive B-cells are generated from B-cell populations that have aberrant c-myc expression. We propose to identify the mechanisms leading to the aberrant c-myc expression and to characterize the B-cell populations that have aberrant c-myc expression in B6.Sle1 mice. We also propose to use powerful, microarray-based approaches to identify the molecular mechanisms by which Sle1 and S1e3 interact to cause lupus. Furthermore, we propose to identify lupus susceptibility gene(s) in the S1e3 interval using fine mapping in combination with functional genomics. By identifying the lupus susceptibility genes and the molecules involved in the pathogenesis, we can select candidate therapeutic targets for curing lupus. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
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Project Title: Epidemiology of Osteoporosis in Women with Lupus MAMDC Project Principal Investigator & Institution: Ramsey-Goldman, Rosalind; Professor; Northwestern University 303 E Chicago Ave Chicago, Il 60611 Timing: Fiscal Year 2000
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Summary: The specific aims to be addressed in this study are: 1) To estimate the differences in bone mineral density (BMD) at the hip and lumbar spine between 128 Caucasian and 128 African-American women with lupus and a comparable control group matched by age, race, and menopause status; 2) To determine the association of lupus risk factors with low BMD in women with lupus, after controlling for traditional risk factors for low BMD; 3) To follow the subjects entered in the crosssectional study over a two year period in order to estimate the difference in the rate of bone loss at the hip and lumbar spine between women with lupus and a comparable control group matched by age, race, and menopause status; and 4) To determine the association of lupus risk factors with increased rates of bone loss in women with lupus, after controlling for traditional risk factors for low BMD. The hypotheses to be examined in this study are: 1a) Women with lupus have lower BMD at the hip and spine than matched controls; 1b) the negative effect of lupus on bone mineral density at the hip and spine is greater in Caucasian than in African-American women; 2a) Traditional risk factors for low BMD (nulliparty and menopause status, irregular menstrual cycles or premature menopause, avoidance of oral contraceptives and/or hormone replacement therapy, lower physical activity level, and decreased vitamin D levels) are associated with lower BMD at the hip or lumbar spine in women with lupus; 2b) lupus risk factors (greater disease activity, greater disease severity, higher corticosteroid burden, use of anticonvulsant drugs, and the presence of renal disease) are associated with lower BMD at the hip or lumbar spine in women with lupus, after controlling for traditional risk factors forlow BMD; 3a) Women with lupus have accelerated bone loss at the hip and spine during two additional years of lupus disease compared with matched controls followed for two years; 3b) the effect of lupus on the rate of bone loss at the hip and spine is greater in Caucasian than in African-American women; 4a) Traditional osteoporosis risk factors (mentioned in 2a above) are associated with accelerated bone loss in women with lupus; and 4b) lupus risk factors (mentioned in 2b above) are associated with accelerated bone loss at the hip or lumbar spine in women with lupus, after controlling for traditional risk factors for low BMD. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Genetic Analysis of Lupus Autoimmunity Principal Investigator & Institution: James, Judith A.; Associate Professor; Oklahoma Medical Research Foundation 825 Ne 13Th St, Ms 31 Oklahoma City, Ok 73104
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Timing: Fiscal Year 2000; Project Start 0-SEP-1996; Project End 1-AUG2001 Summary: Description The applicant, and her mentor, John Harley, M.D., Ph.D., have recently demonstrated that normal rabbits immunized with specific short peptides derived from the Sm autoantigen develop high levels of both anti-Sm and anti-nRNP antibodies; the peptides used as immunogens were selected since they are also bound by human lupus autoantibodies. The peptide-immunized rabbits, in addition to anti-Sm and anti-nRNP antibodies, also develop positive ANA, antibodies to DNA, and clinical features reminiscent of human lupus including proteinuria, red cell casts, renal insufficiency, hypoalbuminemia, thrombocytopenia, alopecia, and seizures. The antibodies that develop to Sm and nRNP are apparently of high titer in that they precipitate in double immunodiffusion assays and bind RNP antigens in solution phase and by immunoblots. In essence, by immunizing rabbits with peptides, Dr. James and Dr. Harley have induced a syndrome in rabbits that resembles human lupus. In more recent, preliminary studies that form the foundation of the present proposal, Dr. James has shown that certain strains of inbred mice also respond to Sm peptide immunization with epitope spreading and genesis of autoantibodies to other parts of the Sm and nRNP autoantigens, as well as positive ANA and antibodies to DNA. In comparison, certain other strains respond to peptide immunization with antibodies against the immunogenetic peptide, but do not develop epitope spreading and other humoral features of lupus. Dr. James now proposes in the current project to identify the genes involved in this peptide-induced lupus model, using the technique of recombinant inbred (RI) mice strains. Human homologies to murine genes will then be sought. Five specific aims are proposed. First, progenitor strains of recombinant inbred mice which do and do not develop peptide induced autoimmunity will be ascertained. The essence of this aim is to carefully identify strains of mice which do and do not develop lupus autoimmunity after immunization, with lupus autoimmunity being defined as spreading of the humoral immune response beyond the peptide of immunization to other regions of the Sm and nRNP autoantigens, as well as the development of positive ANA and anti-DNA antibodies as determined by Crithidiae immunofluorescence. These experiments are already underway with eleven different RI progenitor strains. Preliminary results from these studies suggest that both responder and non-responder strains have been identified. Second, recombinant inbred substrains, produced from a cross between a progenitor responder and non-responder, will be analyzed for evidence of peptide-induced lupus. In these experiments, the RI set derived from the progenitor strains selected in Aim 1 will be immunized with an Sm
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(spliceosomal) peptide and analyzed along with control mice. Animals will be assessed for development of lupus autoimmunity as defined in Aim 1. In the third specific aim, the murine locus (or loci) associated with peptide-induced lupus will be defined. In these experiments, RI sets will be analyzed for linkage of known markers of the affected progenitor strain that has evidence of peptide-induced lupus autoimmunity and/or clinical symptoms. These analyses will be accomplished using a computer program, MapManager V.2.5. Linkage will be determined by Chi square analysis using confidence intervals of p<0.01. Fourth, the identity of any loci found in specific aim four will be confirmed by classical genetic techniques and potential candidate genes examined. In these studies, confirmation of linkage will be obtained either using congenic lines (if one gene is involved in the production of peptideinduced autoimmunity) or via traditional back-cross analyses using the original progenitor strains of the RI set (if multiple loci are involved). In the latter case, gene mapping will be done using conventional markers as well as dispersed polymorphic DNA markers available from the mouse genome project. Finally, in aim 5, human genes homologous to those related to peptide induced autoimmunity in mice will be sought. This aim depends upon the mapping of loci involved in peptide-induced lupus autoimmunity and establishment of candidate genes, as planned in specific aims 3 and 4. If such genes are found, then the comparative human-mouse map in which 80% of the mouse genome is accounted for, will be used to establish probable location of human homologous genes. This specific aim will depend upon a large genetic linkage study in human SLE currently being performed by Dr. Harley, and which already contains 30 pedigrees with a second cohort of an additional 30 pedigrees planned. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Genetic Expression in Systemic Lupus Erythematosus Principal Investigator & Institution: Aune, Thomas M.; Associate Professor; Vanderbilt University 2101 W End Ave Nashville, Tn 37240 Timing: Fiscal Year 2001; Project Start 1-MAY-1994; Project End 0-APR2004 Summary: Systemic lupus erythematosus is a multisystem autoimmune disorder of unknown etiology and poorly understood pathogenesis. The heterogeneity of lupus makes it especially difficult to characterize and quantitate in either routine clinical care or in the setting of controlled clinical trials. These problems limit clinical studies of new therapeutic approaches. We propose to apply methods to analyze gene expression using microarrays to characterize patients with lupus with the following
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specific aims: 1. To compare 7 lupus patients and 3 control subjects for differences in gene expression on gene filter microarrays analyzing 20,000-30,000 gene sequences. 2. To further evaluate groups of related genes suggested by Aim #1 to be of importance in lupus using either selected microarays or RNA (Northern) blot analyses. 3. To examine the gene expression findings for correlations with clinical features, activity and severity of lupus. Studies of gene expression in subjects with lupus offer several advantages over existing approaches. In addition to providing a noninvasive, easily repeatable measure of immune system activation, the results can be quantified and compared for many subjects. More importantly, there is the real possibility of identifying new pathways of immune activation at the molecular level which may in turn suggest approaches to the development of novel therapeutic agents. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Genetic Linkage in Lupus Principal Investigator & Institution: Harley, John B.; Professor; Oklahoma Medical Research Foundation 825 Ne 13Th St, Ms 31 Oklahoma City, Ok 73104 Timing: Fiscal Year 2000; Project Start 1-JUL-1987; Project End 1-JAN2005 Summary: The genetic basis of systemic lupus erythematosis has been pursued using the last five years of funding from this grant (AR24717-07 to -11) to help perform and evaluate a genome scan in lupus. These results considered with those of our closest competitor show 26 possible genetic linkages with 11 of these having some support for linkage from both studies. In addition, we confirm evidence supporting the presence of linkage at D1s229. Other work has advanced Epstein-Barr virus as a possible etiologic agent in lupus. Data show association, are consistent with Epstein-Barr virus infection preceding lupus onset, and advance a plausible mechanism for lupus autoimmunity in some patients. Virus exposure data and differences between the anti-viral immune responses of lupus patients and normal are amenable to genetic analysis in our pedigrees. In aggregate, we have 2109 pedigrees multiplex for lupus containing 1227 subjects (275 affecteds & 752 unaffecteds). We hope to continue our work by pursuing the following specific aims: 1. Enlarge the pedigree collection; 2. Establish linkage using: A. Lupus (by revised ACR criteria), B. An environmental factor and intermediate phenotypes: i. Lupus and Epstein-Barr virus infection, ii. Anti-peptide antibodies against Epstein-Barr virus (& against lupus autoantigens), iii. Anti-Ro and anti-nRNP autoantibody responses, and C. Multi-locus effects, and 3. Reduce linkage intervals and evaluate candidate genes. Hopefully,
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results from this resubmitted project will help elucidate the complex genetics of lupus. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Immune Mechanisms in Pristane Induced Lupus Nephritis Principal Investigator & Institution: Reeves, Westley H.; Professor; Medicine; University of Florida Gainesville, Fl 32611 Timing: Fiscal Year 2000; Project Start 1-JAN-1999; Project End 1-DEC2003 Summary: Intraperitoneal injection of pristane (2,6, 10, 14tetramethylpentadecane) induces a lupus-like syndrome in nearly all "normal" strains of inbred mice. This syndrome is characterized by disease-specific autoantibody production (anti-Sm, RNP, Su, ribosomal P, double stranded DNA), hypergammaglobulinemia, and severe immune complex-mediated glomerulonephritis closely resembling lupus nephritis. In preliminary studies, it was shown that the disease develops in two phases, each with characteristic types of autoantibodies. cytokines, and renal involvement. Microbial stimulation was found to be an important co-factor in progression to the second. more severe, phase. This project will examine the hypothesis that immune complex deposition is necessary, but not sufficient, for the development of nephritis in pristane-induced lupus. Further, it is hypothesized that a systemic abnormality in macrophage or monocyte phenotype resulting from pristane and/or microbial stimulation leads to the production of proinflammatory cytokines and disease progression. The goal of this project is to define pathways leading to glomerulonephritis in pristanetreated mice and ultimately to relate them to human lupus nephritis. Three specific aims are proposed. The pathology of the renal lesions will be defined in Aim 1. Mesangial and mesangiocapillary lesions will be studied by immunohistochemical techniques to determine whether hypercellularity reflects proliferation of endogenous (mesangial or endothelial) cells vs. influx of exogenous macrophages, lymphocytes or neutrophils. In addition, mesangial matrix deposition will be evaluated, and the time course of the renal changes will be studied. The roles of provs. anti- inflammatory cytokines will be evaluated in Aim 2. Cytokine production in the glomerulus will be compared with that by phagocytes in the peritoneal exudate, spleen and liver to see if systemic abnormalities are present. Expression of cytokine-inducible markers will be studied as a means to evaluate whether the effects of pro-or anti-inflammatory cytokines predominate. The contribution of microbial stimulation to the development of nephritis in pristane-induced lupus will be examined in
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Aim 3. It is hypothesized that enhanced intestinal permeability resulting from pristane injection increases the translocation of microbial products, such as lipopolysaccharide, into the bloodstream. This may cause systemic activation of monocytes and macrophages, which then are recruited to the glomerulus in response to immune complex deposition, causing progression instead of resolution of the renal lesion. In view of the widespread susceptibility among "normal" mice to pristane-induced lupus, it seems likely that pristane causes lupus- like disease by its effects on a common, distal, part of a lupus pathway, largely bypassing the genetic abnormalities that predispose to spontaneous forms of the disease. The mechanisms involved in this new inducible model of SLE may, therefore, be common to other forms of lupus, including human SLE. Future studies will address the question of whether renal abnormalities similar to those induced by pristane are involved in the pathogenesis of human lupus nephritis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Immunologic Mechanism in Lupus Nephritis Principal Investigator & Institution: Madaio, Michael P.; Associate Professor; Medicine; University of Pennsylvania 3451 Walnut Philadelphia, Pa 19104 Timing: Fiscal Year 2000; Project Start 1-JAN-1985; Project End 0-JUN2002 Summary: (Adapted from Investigator's Abstract): The overall aim of this project is to develop a better understanding of the immunologic events leading to glomerular immune deposit formation in individuals with Systemic Lupus Erythematosus. In previous studies, murine and human monoclonal anti-DNA antibodies (Ab) were identified that produced glomerulonephritis following transfer to normal mice. Of particular relevance, the location of immune deposit formation and disease phenotype varied with the mAb. Furthermore, these individual pathogenic Ab bound directly to glomerular cell surface antigens, however each monoclonal anti-DNA Ab recognized a different cell surface proteins. Based on these observations, it was postulated that different autoantibody-glomerular antigen interactions, in vivo, contributes to the phenotypic diversity observed both among the monoclonal Ab and among individuals with lupus. A primary goal of this project is to fully identify the glomerular cell surface antigens for three nephritogenic lupus autoantibodies: anti-DNA MES and anti-DNA SE, derived from MRL-lpr/lpr mice; and RH-14, a human anti-DNA Ab. Anti-DNA MES produces mesangial deposits and binds to mesangial cells, whereas anti-DNA SE produces subendothelial deposits and binds
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to glomerular endothelial cells. RH14 produces massive subendothelial deposits on transfer to SCID mice, and it binds to glomerular endothelial cells. Candidate cell surface protein antigens were isolated for the autoantibodies. Peptides derived from the isolated proteins will be sequenced and then used to generate both degenerate oligonucleotides and anti-peptide antibodies to screen cDNA libraries, in order to define the full sequence and identity of the immunoreactive proteins. Another primary goal of the project is to further determine the pathogenic relevance of these autoantibody-glomerular cell interactions by examining: i) the immune response to the purified cell surface proteins, ii) other spontaneously produced autoantibodies with anti-cell surface protein activity; and iii) the cellular and functional consequences of Ab ligation of the cell surface proteins. Studies will be performed to begin to determine the overall relevance of direct binding of human lupus autoantibodies to glomerular antigens, in general, using: human lupus sera from the Lupus Collaborative Study and controls, the purified cell surface antigens, and individual glomerular cells. Collectively, the results should identify disease-relevant glomerular antigens for pathogenic lupus autoantibodies and provide insights into the overall pathogenic relevance of autoantibody-glomerular cell surface antigen interactions in lupus nephritis. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Lymphocyte Signaling Defects in Patients with Lupus Principal Investigator & Institution: Tsokos, George C.; Professor; Henry M. Jackson Fdn for the Adv Mil/Med the Advancement of Military Med Bethesda, Md 20814 Timing: Fiscal Year 2000; Project Start 5-JUL-1998; Project End 1-MAY2003 Summary: Systemic lupus erythematosus (SLE) is an idiopathic autoimmune syndrome characterized by disorders of the cellular and humoral immune response that lead to autoantibody production. We have recently demonstrated that lupus lymphocytes display diseasespecific, antigen receptor- initiated signaling aberrations and hypothesized that these abnormalities result in altered expression of gene(s) that impair T and B cell immune effector function. The proposed experiments, grouped in 4 specific aims, are based on the finding that lupus T cells display deficient expression of T cell receptor (TCR) zetu chain: 1. We shall test the hypothesis that TCR zetu chain deficiency is disease specific and independent of lupus disease activity. To test this hypothesis we will (a) establish the defective expression of zetu chain in lupus patients and determine its possible association with disease
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activity, (b) establish whether the defect is limited to lupus, and (c) establish the heritability of the disorder. 2. We shall test the hypothesis that zetu chain is exclusively defective in lupus T cells and that this defect is associated with abnormal phosphorylation of certain cytosolic proteins that are important in T cell signaling. To test this hypothesis we shall determine (a) whether other chains of the CD3 complex and the zetu protein family are deficient in lupus T cells, and (b) which proteins are involved in the increased protein tyrosine phosphorylation that is observed following crosslinking of the CD3 molecule. 3. We shall test the hypothesis that zetu chain deficiency is causally associated with the CD3initiated hyperphosphorylation of cytosolic proteins in lupus T cells and the increased Ca2+ response. This hypothesis will be tested by (a) establishing an association between the effective expression of the zetu chain and the abnormal CD3- initiated signaling, (b) by transfecting lupus T cells with the zetu chain gene and testing whether successful transfection will reverse the described abnormal cell signaling events, and (c) determining whether the marginally CD3-mediated inositol 1,4,5 trisphosphate (IP3) production increase is due the aberrant phospholipase Cgamma and IP3 receptor phosphorylation. Finally, in the 4th specific aim we will test the hypothesis that zetu chain deficiency is the result of deletion(s) or mutation(s) of the coding or the promoter region of the gene. Experiments will be performed to consider the alternative hypothesis, i.e., zetu chain deficiency in lupus cells is the result of cell activation or other cellular regulatory abnormality. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Mechanism of Autoimmune Response in Human Lupus Principal Investigator & Institution: Datta, Syamal K.; Professor; Medicine; Northwestern University 303 E Chicago Ave Chicago, Il 60611 Timing: Fiscal Year 2000; Project Start 1-AUG-1993; Project End 1-JUL2005 Summary: (Adapted from the Applicant's Abstract): The long-term goal of this project is to define basic mechanisms of autoimmunity in Systemic Lupus Erythematosus (SLE), by focusing on disease-relevant T helper (Th) cells that induce the production of pathogenic anti-DNA autoantibodies in SLE. The full spectrum of major peptide epitopes, including naturally processed peptide epitopes, for the pathogenic autoantibody-inducing Th cells of human lupus that recognize nucleosomes in a promiscuous manner will be defined. Shared epitopes for autoimmune B-cells of lupus will also be identified. Immunologic relevance of the epitopes in influencing autoimmune T- and B-cell functions will be studied. T-cell receptor (TCR) and MHC-contact
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residues in the peptide epitopes will be finely mapped for finding consensus motifs that could lead to autoantigen -specific therapy of lupus in humans using tolerogenic peptides or altered peptide ligands. Altered peptide ligands that are partial agonists or antagonists will be designed and studied for blocking pathogenic anti-DNA autoantibody production in vitro. Nucleosomal peptide-HLA-DR tetramers (or peptide-MHC-Ig chimeric dimers) will be made to track autoimmune T-cells in lupus patients and family members for diagnostic and prognostic purposes, and for studying the effects of peptide tolerogens in vitro. The second part of the project will deal with mechanisms of prolonged hyperexpression of CD40 ligand (CD40L) and resistance to anergy induction and maintenance in T-cells of human lupus. Major components of T-cell signal transduction pathways involved in T-cell activation, and anergy, particularly in the context of CD40L hyper-expression will be defined. The role of differential MAPK activity in CD40L hyper-expression and stability of CD40L mRNA in lupus T-cells will be studied. Possible anomalies in B7-CD28, and CTLA-4 expression and function in lupus Tcells that could lead to the above mentioned defects being analyzed. Identification of critical peptide epitopes for the autoimmune T helper cells of lupus and studies on regulatory defects in expression of costimulatory signaling molecules are leading towards an understanding of basic mechanisms of the disease and development of specific immunotherapy. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Nitric Oxide and Systemic Lupus Erythematosus Principal Investigator & Institution: Gilkeson, Gary S.; Professor; Medicine; Medical University of South Carolina 171 Ashley Ave Charleston, Sc 29425 Timing: Fiscal Year 2000; Project Start 3-APR-1999; Project End 1-MAR2002 Summary: Nitric oxide (NO) is a biologically pluripotent compound that is induced during immune responses and overproduced in murine models of lupus. We have found in murine lupus: 1) pharmacologic blockade of NO production ameliorates lupus-like disease, 2) nitration of tyrosine residues of several proteins including catalase with alternations in catalase function in the kidney, and 3) increased levels of NO in the spleens modulate splenocyte apoptosis. In our retrospective studies of human lupus, serum measures of NO (serum nitrate) correlated with clinical disease activity, although there was overlap between normals and lupus patients which may reflect effects of dietary nitrate intake. To definitively determine NO production in human lupus compared to
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controls and the effects of NO in disease pathogenesis, we propose a prospective study of lupus patients and murine studies to provide insight into immune factors promoting NO production in disease. These studies are incorporated in the following specific aims: 1. Prospectively follow 70 lupus patients with primarily early disease monitoring disease activity and systemic NO production via serum nitrate/nitrite and 3nitrated proteins quarterly for 3 years. 2. A. Measure apoptosis of PBMCs in lupus patients and controls both in vivo and in vitro, correlating apoptosis with disease activity and NO production. B. Determine NOS2 expression in human lupus kidneys and correlate NOS2 expression with disease class, activity, and chronicity. C. Identify serum factors in lupus sera that stimulate NO production by PBMCs. D. Identify human lupus serum and kidney proteins that are nitrated using mass spectrometry analysis. 3. A. Using genetically deficient mice, we will determine the role of immunoglobulin, C3, complement factor B, and CD40 in macrophage activation and NO production in MRL-lpr mice. B. We will assess if LNIL, a specific inhibitor of NOS2, is effective in preventing lupus-like disease in MRL-lpr mice. C. We will determine if estrogen modulates NO production in MRL-lpr mice using ovariectomy studies and estrogen receptor knockout mice. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Pilot Study--NZW Derived Resistance to Marine Lupus Principal Investigator & Institution: Ferguson, Polly J.; University of Alabama at Birmingham Uab Station Birmingham, Al 35294 Timing: Fiscal Year 2001; Project Start 8-SEP-2001; Project End 1-AUG2006 Summary: Systematic Lupus Erythematosus (SLE) is a phenotypically diverse, multi-system autoimmune disorder that is caused by ill-defined interaction(s) between environmental and genetic factors. Genome wide linkage analysis of SLE multiplex families suggests there is significant racial and genetic heterogeneity, further complicating the genetic dissection of this disorder. Fortunately, there are phenotypically similar mouse models of lupus; including genetically engineered and spontaneous models. Most of the investigative work in this field has focused on identifying disease susceptibility loci; however, there are experimental data that data that suggest disease resistance genes are also important. The non-autoimmune New Zealand White (NZW) mouse does not develop lupus despite harboring the best characterized lupus susceptibility intervals and a disease permissive major histocompatibility locus [H-2z/z] suggesting that the NZW genome contains allelic polymorphisms that negatively regulate the phenotypic expression of
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lupus susceptibility gene(s). We hypothesize that experimental crosses between NZW and C57BL/6.FcgammaRIIB-deficient mice will allow the identification of NZW-derived intervals that attenuate the lupus phenotype(s) in this genetically engineered murine model of lupus. We will 1) map the quantitative trait loci (QTL) that modulate the FcgammaRIIB-/- lupus phenotype and 2) construct chromosome substitution strains (CSS) in order to dissect the genetic contribution of these individual QTL. Identification of QTL that modulate that lupus phenotype and the subsequent development of QTL containing CSS will lay the foundation for the future functional assessment of the lupusattenuating QTL and for candidate gene analysis. Understanding the genetic basis of disease resistance could facilitate the development of novel therapeutic approaches for treatment this devastating disease. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: T Cell Cost Immulation On Murine Lupus Principal Investigator & Institution: Daikh, David I.; Medicine; University of California San Francisco 500 Parnassus Ave San Francisco, Ca 94122 Timing: Fiscal Year 2000; Project Start 1-SEP-1997; Project End 1-AUG2002 Summary: Systemic Lupus Erythematosis is a systemic autoimmune disease of unknown cause characterized by the production of antibodies directed against a variety of self antigens. A spontaneous form of lupus which closely parallels the human disease also occurs in the lupus-prone B/W mouse. Production of autoantibodies in humans and the B/W mouse is dependent on activated CD4+ helper T cells. Activation of these T-cells requires interactions between the T-cell antigen receptor and antigen presented by an antigen-presenting cell, as well as a second signal which can be provided by interactions between B7 molecules on antigen- presenting cells and the CD28 molecule on the T-cell. Blockade of the first signal by antibodies against the CD4 molecule is effective in preventing or reversing lupus in the B/W mouse, an observation which in part led to therapeutic trials with anti-CD4 antibodies in humans with autoimmune disease. Blockade of the second activation signal by a soluble molecule called aLA4Ig has recently been shown to dramatically slow the progression of lupus in B/W mice as well as treat established disease. The mechanism of this effect, however, is unknown. T cell costimulation can also be provided by interactions between CD4O and its cognate ligand gp39, but the role of these molecules in autoimmunity is also unknown. The objective of the current proposal is to further define the mechanism by which interruption of T-cell costimulation can block the development of autoimmunity. This objective encompasses five
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specific aims: Specific Aim 1. To determine the relative contributions of B7-1 and B7-2 to the development of autoimmunity in lupus-prone NZB/NZW (B/W) mice. Specific Aim 2. To determine if blockade of CD28 and/or CTLA4 early in life can induce tolerance to autoantigens. Specific Aim 3. To determine the effects of costimulation blockade on T cell cytokine production in lupus-prone mice Specific Aim 4. To determine the role of Th1 and Th2 cells in the development and maintenance of murine lupus. Specific Aim 5. To determine whether interruption of multiple costimulation signals can have a synergistic effect on murine lupus. These studies will not only define the critical costimulation signal(s) necessary for the development of murine lupus, but should point to new, more specific therapeutic approaches in humans. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: T Cells and the Induction of Lupus Principal Investigator & Institution: Richardson, Bruce C.; Professor; Internal Medicine; University of Michigan at Ann Arbor Ann Arbor, Mi 48109 Timing: Fiscal Year 2000; Project Start 0-SEP-1993; Project End 0-JUN2002 Summary: (Adapted from the applicant's abstract)-Decreased T cell DNA methyltransferase (MTase) activity has been causally linked to human lupus. The principal investigator's group has reported that inhibiting DNA MTase in dividing T cells results in DNA hypomethylation, LFA-1 overexpression, and autoreactivity, and that adoptive transfer of the autoreactive cells is sufficient to cause a lupus-like disease. They have also shown that some agent which induce lupus, including procainamide, hydralazine, and UV light, inhibit T cell DNA methylation, increase LFA-1 expression, and induce autoreactivity, and they have used the adoptive transfer model to demonstrate a mechanism by which these agents can trigger a lupus-like disease. They and others have shown that T cells from patients with active lupus have diminished levels of DNA MTase, hypomethylated DNA, and overexpress LFA-1 on an autoreactive T cell subset, indicating that a similar mechanism could contribute to idiopathic SLE Together, these results suggest that abnormally decreased T cell DNA MTase enzyme activity may directly contribute to the development of drug- induced and idiopathic lupus by modifying T cell gene expression. The mechanisms regulating human DNA MTase are unknown. This group has established that levels of DNA MTase normally increase following T cell stimulation. They have also obtained evidence that human DNA MTase levels may be regulated
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through the ras-MAPK signaling pathway. In other studies the principal investigator found that the mitogen-stimulated increase in DNA MTase is impaired in T cells from patients with active lupus, and the Ha-ras mRNA levels and ras-MAPK signaling are diminished in these T cells, suggesting a mechanism for the decreased DNA MTas response. Finally, the principal investigator has evidence for multiple isoforms of human DNA MTase, the function and expression of which are unknown. The principal investigator hypothesizes that decreases in the levels of DNA MTase, due to decreased Ha-ras expression, may contribute to the development of lupus. The principal investigator also hypothesizes that the different isoform of DNA MTase serve distinct roles within the cell. The specific aims are to: 1 Determine the role of the ras-MAPK signaling pathway in the regulation and function of human T cell DNA MTase; 2) determine the pathologic significance of decreased Ha-ras pathway signaling using a novel model of drug-induced lupus; 3) determine the significance of the decreased Ha-ras levels observed in T cells from patients with active lupus, and 4) characterize expression of DNA MTase isoforms. The principal investigator anticipates that these studies will clarify mechanisms contributing to the development of human lupus. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket ·
Project Title: Regulation of TNF-Alpha Production in SLE Principal Investigator & Institution: Liu, Yi; Medicine; University of Southern California University Park Los Angeles, Ca 90007 Timing: Fiscal Year 2000; Project Start 1-JUN-2000; Project End 1-JUL2000 Summary: It is estimated that 1.4 to 2 million people in the USA suffer from Systemic lupus erythematosis (SLE). At present, there is no cure for SLE. The pathogenesis of SLE is still unknown. Studies have suggested that cytokines may play an important role in its pathogenesis. Tumor necrosis factor alpha (TNFalpha) is a cytokine with very diverse physiological and pathological activities. Several lines of evidence have suggested that TNFalpha play an essential role in the development and progression of SLE. First, it has been reported that TNFalpha production in activated monocytes from SLE patients is significantly decreased. Second, it has also been shown that lupus patients with low TNFalpha production have an increased incidence of lupus nephritis. Lastly, in a SLE murine model, the levels of TNFalpha production by activated macrophages are significantly lower in NZW lupus prone mice. Treatment with recombinant TNFalpha significantly reduces the incidence of lupus nephritis in these mice. Recent studies have demonstrated that reduced production of TNFalpha in NZW lupus-
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prone mice is mainly regulated at the translational level, mediated by the 3' untranslated region (3'UTR) of the TNFalpha gene. In this project, I will dissect the 3'UTR of the TNFalpha gene and characterize its role in the regulation of TNFalpha production. My specific aims are: 1. To delineate the translational regulatory cis-acting elements in the TNFalpha 3'UTR of NZW lupus-prone mice through deletion and site- directed mutagenesis using transient transfection assays with the luciferase reporter system. 2. To test whether the RNA-protein binding profile is different between the mutated 3'UTR of the lupus-prone NZW mouse and the non-mutated 3'UTR of the non-lupus-prone mouse and to further characterize the trans- acting factors involved in regulating the T'NFalpha gene. The elucidation of the mechanism of regulation of TNFalpha production is fundamental in understanding the pathogenesis of SLE, with possible implications in SLE treatment through manipulation of TNFalpha production. Accomplishment of the proposed project also has the potential to enhance our understanding of post-transcriptional gene regulation in general. Website: http://commons.cit.nih.gov/crisp3/CRISP.Generate_Ticket
E-Journals: PubMed Central20 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).21 Access to this growing archive of e-journals is free and unrestricted.22 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “lupus” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for lupus in the PubMed Central database: ·
A genome-wide search for susceptibility genes in human systemic lupus erythematosus sib-pair families by Patrick M. Gaffney, Grainne M. Kearns, Katherine B. Shark, Ward A. Ortmann, Scott A. Selby, Michelle L. Malmgren, Kristine E. Rohlf, Theresa C. Ockenden, Ronald P.
Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 21 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 22 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 20
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Messner, Richard A. King, Stephen S. Rich, and Timothy W. Behrens; 1998 December 8 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=24543 ·
Amelioration of Lupus-Like Autoimmune Disease in NZB/W F1 Mice after Treatment with a Blocking Monoclonal Antibody Specific for Complement Component C5 by Y Wang, Q Hu, JA Madri, SA Rollins, A Chodera, and LA Matis; 1996 August 6 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=38712
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Antibodies to ribosomal P proteins of Trypanosoma cruzi in Chagas disease possess functional autoreactivity with heart tissue and differ from anti-P autoantibodies in lupus by Dan Kaplan, Ines Ferrari, Pablo Lopez Bergami, Evelina Mahler, Gabriela Levitus, Pablo Chiale, Johan Hoebeke, Marc H. V. Van Regenmortel, and Mariano J. Levin; 1997 September 16 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=23357
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Control of separate pathogenic autoantibody responses marks MHC gene contributions to murine lupus by Timothy J. Vyse, Richard K. Halterman, Stephen J. Rozzo, Shozo Izui, and Brian L. Kotzin; 1999 July 6 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=22194
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Defective cAMP-Dependent Phosphorylation of Intact T Lymphocytes in Active Systemic Lupus Erythematosus by P Hasler, LA Schultz, and GM Kammer; 1990 March 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=53608
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Effect of genetic background on the contribution of New Zealand Black loci to autoimmune lupus nephritis by Stephen J. Rozzo, Timothy J. Vyse, Charles G. Drake, and Brian L. Kotzin; 1996 December 24 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=26374
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Genetic Analysis of the NZB Contribution to Lupus-Like Autoimmune Disease in (NZB x NZW)F1 Mice by CG Drake, SK Babcock, E Palmer, and BL Kotzin; 1994 April 26 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=43723
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Genetic linkage and transmission disequilibrium of marker haplotypes at chromosome 1q41 in human systemic lupus erythematosus by Robert R. Graham, Carl D. Langefeld, Patrick M. Gaffney, Ward A. Ortmann, Scott A. Selby, Emily C. Baechler, Katherine B. Shark, Theresa C. Ockenden, Kristine E. Rohlf, Kathleen L. Moser, William M. Brown, Sherine E. Gabriel, Ronald P. Messner, Richard A. King, Pavel Horak,
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James T. Elder, Philip E. Stuart, Steven S. Rich, and Timothy W. Behrens; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=64842 ·
Genetic reconstitution of systemic lupus erythematosus immunopathology with polycongenic murine strains by Laurence Morel, Byron P. Croker, Kim R. Blenman, Chandra Mohan, Guanling Huang, Gary Gilkeson, and Edward K. Wakeland; 2000 June 6 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=18697
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Genome scan of human systemic lupus erythematosus: Evidence for linkage on chromosome 1q in African-American pedigrees by Kathy L. Moser, Barbara R. Neas, Jane E. Salmon, Hua Yu, Courtney GrayMcGuire, Neeraj Asundi, Gail R. Bruner, Jerome Fox, Jennifer Kelly, Stephanie Henshall, Debra Bacino, Myron Dietz, Robert Hogue, Gerald Koelsch, Lydia Nightingale, Tim Shaver, Nabih I. Abdou, Daniel A. Albert, Craig Carson, Michelle Petri, Edward L. Treadwell, Judith A. James, and John B. Harley; 1998 December 8 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=24542
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Heritable Major Histocompatibility Complex Class II-Associated Differences in Production of Tumor Necrosis Factor [alpha]: Relevance to Genetic Predisposition to Systematic Lupus Erythematosus by CO Jacob, Z Fronek, GD Lewis, M Koo, JA Hansen, and HO McDevitt; 1990 February 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=53445
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Immunophilins, Refsum disease, and lupus nephritis: The peroxisomal enzyme phytanoyl-COA [alpha]-hydroxylase is a new FKBP-associated protein by Beatrice Chambraud, Christine Radanyi, Jacques H. Camonis, Krzysztof Rajkowski, Michael Schumacher, and Etienne-Emile Baulieu; 1999 March 2 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=26744
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In vivo Expression of a Single Viral DNA-Binding Protein Generates Systemic Lupus Erythematosus-Related Autoimmunity to DoubleStranded DNA and Histones by U Moens, O Seternes, AW Hey, Y Silsand, T Traavik, B Johansen, and OP Rekvig; 1995 December 19 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=40364
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Induction of Anti-Phospholipid Syndrome in Naive Mice with Mouse Lupus Monoclonal and Human Polyclonal Anti-Cardiolipin Antibodies by M Blank, J Cohen, V Toder, and Y Shoenfeld; 1991 April 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=51386
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Junctional Region Sequences of T-Cell Receptor [beta]-Chain Genes Expressed by Pathogenic Anti-DNA Autoantibody-Inducing Helper T Cells from Lupus Mice: Possible Selection by Cationic Autoantigens by S Adams, P Leblanc, and SK Datta; 1991 December 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=53116
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Lupus Susceptibility Loci in New Zealand Mice by DH Kono, RW Burlingame, DG Owens, A Kuramochi, RS Balderas, D Balomenos, and AN Theofilopoulos; 1994 October 11 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=44979
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Mitral Valve Replacement and Repair: Report of 5 Patients with Systemic Lupus Erythematosus by John P. Hakim, Anurag Mehta, Abnash C. Jain, and Gordon F. Murray; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=101131
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Modulation of murine systemic lupus erythematosus with peptides based on complementarity determining regions of a pathogenic antiDNA monoclonal antibody by Ari Waisman, Pedro J. Ruiz, Eran Israeli, Eran Eilat, Stephanie Konen-Waisman, Heidy Zinger, Molly Dayan, and Edna Mozes; 1997 April 29 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=20773
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p70 Lupus Autoantigen Binds the Enhancer of the T-Cell Receptor [beta]- Chain Gene by H Messier, T Fuller, S Mangal, H Brickner, S Igarashi, J Gaikwad, R Fotedar, and A Fotedar; 1993 April 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=46160
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Pathogenic Anti-DNA Autoantibody-Inducing T Helper Cell Lines from Patients with Active Lupus Nephritis: Isolation of CD4-8- T Helper Cell Lines That Express the [gamma][delta] T-Cell Antigen Receptor by S Rajagopalan, T Zordan, GC Tsokos, and SK Datta; 1990 September 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=54674
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Perturbations in the impact of mutational activity on V[lambda] genes in systemic lupus erythematosus by Thomas Dorner, Sabine Kaschner, Arne Hansen, Axel Pruss, and Peter E. Lipsky; 2001 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=64848
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Role of the major histocompatibility complex class II Ea gene in lupus susceptibility in mice by Nabila Ibnou-Zekri, Masahiro Iwamoto, Liliane Fossati, Patricia J. McConahey, and Shozo Izui; 1997 December 23 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=25083
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Somatic Diversification in the Heavy Chain Variable Region Genes Expressed by Human Autoantibodies Bearing a Lupus-Associated Nephritogenic Anti-DNA Idiotype by C Demaison, P Chastagner, J Theze, and M Zouali; 1994 January 18 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=42979
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Surface Blebs on Apoptotic Cells are Sites of Enhanced Procoagulant Activity: Implications for Coagulation Events and Antigenic Spread in Systemic Lupus Erythematosus by L Casciola-Rosen, A Rosen, M Petri, and M Schlissel; 1996 February 20 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=39992
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The Fas Protein is Expressed at High Levels on CD4+CD8+ Thymocytes and Activated Mature Lymphocytes in Normal Mice but not in the Lupus-Prone Strain, MRL lpr/lpr by J Drappa, N Brot, and KB Elkon; 1993 November 1 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=47770
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The major murine systemic lupus erythematosus susceptibility locus, Sle1, is a cluster of functionally related genes by Laurence Morel, Kim R. Blenman, Byron P. Croker, and Edward K. Wakeland; 2001 February 13 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=29335
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The mechanism by which a peptide based on complementaritydetermining region-1 of a pathogenic anti-DNA auto-Ab ameliorates experimental systemic lupus erythematosus by Eran Eilat, Molly Dayan, Heidy Zinger, and Edna Mozes; 2001 January 30 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=14723
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Trichostatin A reverses skewed expression of CD154, interleukin-10, and interferon-[gamma] gene and protein expression in lupus T cells by Nilamadhab Mishra, Doris R. Brown, Irene M. Olorenshaw, and Gary M. Kammer; 2001 February 27 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=30189
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Very Long Charge Runs in Systemic Lupus Erythematosus-Associated Autoantigens by V Brendel, J Dohlman, BE Blaisdell, and S Karlin; 1991 February 15 http://www.pubmedcentral.nih.gov/articlerender.fcgi?rendertype=abst ract&artid=51054
The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.23 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with lupus, simply go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “lupus” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “lupus” (hyperlinks lead to article summaries): ·
Omega-3 fatty acid supplementation in clinical and experimental lupus nephritis. Author(s): Clark WF, Parbtani A. Source: American Journal of Kidney Diseases : the Official Journal of the National Kidney Foundation. 1994 May; 23(5): 644-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8172205&dopt=Abstract
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Paclitaxel reduces anti-dsDNA antibody titer and BUN, prolonging survival in murine lupus. Author(s): Song YW, Kim HA, Baek HJ, Lee EB, Chung ES, Hong KM.
PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication.
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Source: International Journal of Immunopharmacology. 1998 November; 20(11): 669-77. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9848398&dopt=Abstract ·
Paraneoplastic subacute cutaneous lupus erythematosus: report of a case associated with cancer of the lung. Author(s): Brenner S, Golan H, Gat A, Bialy-Golan A. Source: Dermatology (Basel, Switzerland). 1997; 194(2): 172-4. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9094469&dopt=Abstract
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Patient management of systemic lupus erythematosus. Author(s): White JF, Ziegler GL. Source: Crit Care Update. 1980 August; 7(8): 5-15. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6901660&dopt=Abstract
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Patterns of change over time in learned response to chronic illness among participants in a systemic lupus erythematosus self-help course. Author(s): Braden CJ. Source: Arthritis Care and Research : the Official Journal of the Arthritis Health Professions Association. 1991 December; 4(4): 158-67. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11188603&dopt=Abstract
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Periorbital heliotrope oedema as the only initial clinical manifestation of systemic lupus erythematosus in a primigravida. Author(s): Dai YS, Chiu HC. Source: The British Journal of Dermatology. 2000 September; 143(3): 67980. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10971372&dopt=Abstract
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Plasma concentration of IL-6 in systemic lupus erythematosus; an indicator of disease activity? Author(s): Spronk PE, ter Borg EJ, Limburg PC, Kallenberg CG. Source: Clinical and Experimental Immunology. 1992 October; 90(1): 10610. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1395090&dopt=Abstract
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Prednisolone non-compliance and its related factors in patients with systemic lupus erythematosus. Author(s): Lin WS, Yang WS, Lin HY. Source: Zhonghua Yi Xue Za Zhi (Taipei). 1995 October; 56(4): 244-51. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8548666&dopt=Abstract
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Progressive thrombosis after treatment of diffuse large cell nonHodgkin's lymphoma and concomitant lupus anticoagulant. Author(s): Keung YK, Cobos E, Meyerrose GE, Roberson GH. Source: Leukemia & Lymphoma. 1996 January; 20(3-4): 341-5. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8624478&dopt=Abstract
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Pycnogenol efficacy in the treatment of systemic lupus erythematosus patients. Author(s): Stefanescu M, Matache C, Onu A, Tanaseanu S, Dragomir C, Constantinescu I, Schonlau F, Rohdewald P, Szegli G. Source: Phytotherapy Research : Ptr. 2001 December; 15(8): 698-704. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11746863&dopt=Abstract
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Quality of life in systemic lupus erythematosus. Author(s): Lash AA. Source: Applied Nursing Research : Anr. 1998 August; 11(3): 130-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9757613&dopt=Abstract
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Reflex seizures as initial manifestations of systemic lupus erythematosus in childhood. Author(s): Brinciotti M, Ferrucci G, Trasatti G, Priori R, Squilloni E, Valesini G. Source: Lupus. 1993 August; 2(4): 281-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8268979&dopt=Abstract
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Resolution of severe lupus nephritis associated with Tripterygium wilfordii hook F ingestion. Author(s): Kao NL, Richmond GW, Moy JN.
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Source: Arthritis and Rheumatism. 1993 December; 36(12): 1751-2. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8250996&dopt=Abstract ·
Scabies mimicking systemic lupus erythematosus. Author(s): Bastian HM, Lindgren AM, Alarcon GS. Source: The American Journal of Medicine. 1997 March; 102(3): 305-6. Review. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9217603&dopt=Abstract
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Serial estimation of anti-RNP antibody titers in systemic lupus erythematosus, mixed connective tissue disease and rheumatoid arthritis. Author(s): Nishikai M, Okano Y, Mukohda Y, Sato A, Ito M. Source: J Clin Lab Immunol. 1984 January; 13(1): 15-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6609234&dopt=Abstract
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Severe arthralgia and myalgia due to high-dose methylprednisolone pulse therapy cured by potassium infusion in a patient with diffuse proliferative lupus nephritis. Author(s): Odabas AR, Cetinkaya R, Selcuk Y, Kaya H. Source: Nephron. 2001 January; 87(1): 95. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11174035&dopt=Abstract
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Specific psychosocial and behavioral outcomes from the systemic lupus erythematosus self-help course. Author(s): Braden CJ, McGlone K, Pennington F. Source: Health Educ Q. 1993 Spring; 20(1): 29-41. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8444623&dopt=Abstract
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Stabilization of the classical pathway C3 convertase C42, by a factor F42, isolated from serum of patients with systemic lupus erythematosus. Author(s): Daha MR, Hazevoet HM, Vanes LA, Cats A. Source: Immunology. 1980 July; 40(3): 417-24. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6903557&dopt=Abstract
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Suppression of experimental systemic lupus erythematosus (SLE) with specific anti-idiotypic antibody-saporin conjugate. Author(s): Blank M, Manosroi J, Tomer Y, Manosroi A, Kopolovic J, Charcon-Polak S, Shoenfeld Y. Source: Clinical and Experimental Immunology. 1994 December; 98(3): 434-41. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7994908&dopt=Abstract
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Systemic lupus erythematosus six years following chemotherapy for malignant lymphoma. Author(s): Berliner S, Sidi Y, Mor C, Galili N, Weinberger A, Pinkhas J. Source: Scandinavian Journal of Rheumatology. 1985; 14(3): 276-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=4048875&dopt=Abstract
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The bite of a wolf: systemic lupus erythematosus. Author(s): Bertino LS, Lu LC. Source: Rehabil Nurs. 1993 May-June; 18(3): 173-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8502843&dopt=Abstract
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The effects of Chinese herbs on improving survival and inhibiting anti-ds DNA antibody production in lupus mice. Author(s): Chen JR, Yen JH, Lin CC, Tsai WJ, Liu WJ, Tsai JJ, Lin SF, Liu HW. Source: Am J Chin Med. 1993; 21(3-4): 257-62. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8135170&dopt=Abstract
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The nature of lupus erythematosus in mice. Author(s): Gabrielsen AE. Source: Cutis. 1979 April; 23(4): 401-3. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=428247&dopt=Abstract
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The need for lupus support groups. Author(s): Marx J.
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Source: Health Values. 1985 March-April; 9(2): 35-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10270140&dopt=Abstract ·
The occurrence of psychiatric illness in systemic lupus erythematosus. Author(s): Guze SB. Source: The American Journal of Psychiatry. 1967 June; 123(12): 1562-70. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6025190&dopt=Abstract
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The prognosis of biopsy-proven lupus nephritis in chinese patients: long term follow-up of 86 cases. Author(s): Shen K, Yu Y, Tang Z, Liu Z, Li L. Source: Chin Med J (Engl). 1997 July; 110(7): 502-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9594205&dopt=Abstract
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The use of alternative medical therapies in patients with systemic lupus erythematosus. Trination Study Group. Author(s): Moore AD, Petri MA, Manzi S, Isenberg DA, Gordon C, Senecal JL, St Pierre Y, Joseph L, Penrod J, Fortin PR, Sutcliffe N, Goulet JR, Choquette D, Grodzicky T, Esdaile JM, Clarke AE. Source: Arthritis and Rheumatism. 2000 June; 43(6): 1410-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10857802&dopt=Abstract
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Therapy of systemic lupus erythematosus: a look into the future. Author(s): Smolen JS. Source: Arthritis Research. 2002; 4 Suppl 3: S25-30. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12110120&dopt=Abstract
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Thermal feedback in Raynaud's phenomenon secondary to systemic lupus erythematosus: long-term remission of target symptoms. Author(s): Sappington JT, Fiorito EM. Source: Biofeedback Self Regul. 1985 December; 10(4): 335-41. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3915700&dopt=Abstract
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Thymosin-induced reduction of "null cells" in peripheral-blood lymphocytes of patients with systemic lupus erythematosus. Author(s): Scheinberg MA, Cathcart ES, Goldstein AL. Source: Lancet. 1975 February 22; 1(7904): 424-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=48612&dopt=Abstract
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Treatment of systemic lupus erythematosus by acupuncture. A preliminary report of 25 cases. Author(s): Feng SF, Fang L, Bao GQ, Wei W, Yang GL, Xiang ZS, Shi SY. Source: Chin Med J (Engl). 1985 March; 98(3): 171-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3924508&dopt=Abstract
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Understanding lupus. Author(s): Barwick AR. Source: Nurs Stand. 2000 August 2-8; 14(46): 47-51; Quiz 53-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11974135&dopt=Abstract
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Urtica dioica agglutinin, a V beta 8.3-specific superantigen, prevents the development of the systemic lupus erythematosus-like pathology of MRL lpr/lpr mice. Author(s): Musette P, Galelli A, Chabre H, Callard P, Peumans W, TruffaBachi P, Kourilsky P, Gachelin G. Source: European Journal of Immunology. 1996 August; 26(8): 1707-11. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8765010&dopt=Abstract
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Use of alternative medicine in a consecutive sample of patients with systemic lupus erythematosus. Author(s): Ramos-Remus C, Gamez-Nava JI, Gonzalez-Lopez L, SuarezAlmazor ME. Source: J Rheumatol. 1997 December; 24(12): 2490-1. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9415671&dopt=Abstract
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Visual scotomata resulting from lupus anticoagulant in a patient with lymphoma in remission. Author(s): Gruber ML, Hochberg FH.
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Source: Journal of Neuro-Oncology. 1991 December; 11(3): 255-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1726657&dopt=Abstract ·
Witchcraft and lupus erythematosus. Author(s): Kirkpatrick RA. Source: Jama : the Journal of the American Medical Association. 1981 May 15; 245(19): 1937. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7230386&dopt=Abstract
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Yohimbine-induced cutaneous drug eruption, progressive renal failure, and lupus-like syndrome. Author(s): Sandler B, Aronson P. Source: Urology. 1993 April; 41(4): 343-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8470320&dopt=Abstract
Vocabulary Builder Aberrant: Wandering or deviating from the usual or normal course. [EU] Acne: An inflammatory disease of the pilosebaceous unit, the specific type usually being indicated by a modifying term; frequently used alone to designate common acne, or acne vulgaris. [EU] Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Alopecia: Baldness; absence of the hair from skin areas where it normally is present. [EU] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Anticonvulsant: An agent that prevents or relieves convulsions. [EU] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Arthralgia: Pain in a joint. [EU] Arthroplasty: Surgical reconstruction of a joint to relieve pain or restore
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motion. [NIH] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Auditory: Pertaining to the sense of hearing. [EU] Autoantigens: Endogenous tissue constituents that have the ability to interact with autoantibodies and cause an immune response. [NIH] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Bromocriptine: A semisynthetic ergot alkaloid that is a dopamine D2 agonist. It suppresses prolactin secretion and is used to treat amenorrhea, galactorrhea, and female infertility, and has been proposed for Parkinson disease. [NIH] Captopril: A potent and specific inhibitor of peptidyl-dipeptidase A. It blocks the conversion of angiotensin I to angiotensin II, a vasoconstrictor and important regulator of arterial blood pressure. Captopril acts to suppress the renin-angiotensin system and inhibits pressure responses to exogenous angiotensin. [NIH] Cardiac: Pertaining to the heart. [EU] Catalase: An oxidoreductase that catalyzes the conversion of hydrogen peroxide to water and oxygen. It is present in many animal cells. A deficiency of this enzyme results in acatalasia. EC 1.11.1.6. [NIH] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Coagulation: 1. the process of clot formation. 2. in colloid chemistry, the solidification of a sol into a gelatinous mass; an alteration of a disperse phase or of a dissolved solid which causes the separation of the system into a liquid phase and an insoluble mass called the clot or curd. Coagulation is usually irreversible. 3. in surgery, the disruption of tissue by physical means to form an amorphous residuum, as in electrocoagulation and photocoagulation. [EU] Collagen: The protein substance of the white fibres (collagenous fibres) of skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Concomitant: Accompanying; accessory; joined with another. [EU] Contracture: A condition of fixed high resistance to passive stretch of a muscle, resulting from fibrosis of the tissues supporting the muscles or the joints, or from disorders of the muscle fibres. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished
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from the internal substance. [EU] Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Cryopreservation: Preservation of cells, tissues, organs, or embryos by freezing. In histological preparations, cryopreservation or cryofixation is used to maintain the existing form, structure, and chemical composition of all the constituent elements of the specimens. [NIH] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Distal: Remote; farther from any point of reference; opposed to proximal. In dentistry, used to designate a position on the dental arch farther from the median line of the jaw. [EU] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Eosinophilia: The formation and accumulation of an abnormally large number of eosinophils in the blood. [EU] Epitopes: Sites on an antigen that interact with specific antibodies. [NIH] Exogenous: Developed or originating outside the organism, as exogenous disease. [EU] Exudate: Material, such as fluid, cells, or cellular debris, which has escaped from blood vessels and has been deposited in tissues or on tissue surfaces, usually as a result of inflammation. An exudate, in contrast to a transudate, is characterized by a high content of protein, cells, or solid materials derived from cells. [EU] Femoral: Pertaining to the femur, or to the thigh. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Glomerular: Pertaining to or of the nature of a glomerulus, especially a renal glomerulus. [EU] Gonadal: Pertaining to a gonad. [EU] Haplotypes: The genetic constitution of individuals with respect to one member of a pair of allelic genes, or sets of genes that are closely linked and tend to be inherited together such as those of the major histocompatibility complex. [NIH]
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Hemiplegia: Paralysis of one side of the body. [EU] Heparin: Heparinic acid. A highly acidic mucopolysaccharide formed of equal parts of sulfated D-glucosamine and D-glucuronic acid with sulfaminic bridges. The molecular weight ranges from six to twenty thousand. Heparin occurs in and is obtained from liver, lung, mast cells, etc., of vertebrates. Its function is unknown, but it is used to prevent blood clotting in vivo and vitro, in the form of many different salts. [NIH] Homologous: Corresponding in structure, position, origin, etc., as (a) the feathers of a bird and the scales of a fish, (b) antigen and its specific antibody, (c) allelic chromosomes. [EU] Humoral: Of, relating to, proceeding from, or involving a bodily humour now often used of endocrine factors as opposed to neural or somatic. [EU] Hypercholesterolemia: Abnormally high levels of cholesterol in the blood. [NIH]
Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Immunization: The induction of immunity. [EU] Immunodiffusion: Technique involving the diffusion of antigen or antibody through a semisolid medium, usually agar or agarose gel, with the result being a precipitin reaction. [NIH] Immunotherapy: Manipulation of the host's immune system in treatment of disease. It includes both active and passive immunization as well as immunosuppressive therapy to prevent graft rejection. [NIH] Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU]
Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator of protein and lipid metabolism. Insulin is used as a drug to control insulindependent diabetes mellitus. [NIH] Interstitial: Pertaining to or situated between parts or in the interspaces of a tissue. [EU] Lipoprotein: Any of the lipid-protein complexes in which lipids are transported in the blood; lipoprotein particles consist of a spherical hydrophobic core of triglycerides or cholesterol esters surrounded by an amphipathic monolayer of phospholipids, cholesterol, and apolipoproteins; the four principal classes are high-density, low-density, and very-low-
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density lipoproteins and chylomicrons. [EU] Lymphocytic: Pertaining to, characterized by, or of the nature of lymphocytes. [EU] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Methimazole: A thioureylene antithyroid agent that inhibits the formation of thyroid hormones by interfering with the incorporation of iodine into tyrosyl residues of thyroglobulin. This is done by interfering with the oxidation of iodide ion and iodotyrosyl groups through inhibition of the peroxidase enzyme. [NIH] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Monocytes: Large, phagocytic mononuclear leukocytes produced in the vertebrate bone marrow and released into the blood; contain a large, oval or somewhat indented nucleus surrounded by voluminous cytoplasm and numerous organelles. [NIH] Mutagenesis: Process of generating genetic mutations. It may occur spontaneously or be induced by mutagens. [NIH] Nephrology: A subspecialty of internal medicine concerned with the anatomy, physiology, and pathology of the kidney. [NIH] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuropathy: A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system. The etiology may be known e.g. arsenical n., diabetic n., ischemic n., traumatic n.) or unknown. Encephalopathy and myelopathy are corresponding terms relating to involvement of the brain and spinal cord, respectively. The term is also used to designate noninflammatory lesions in the peripheral nervous system, in contrast to inflammatory lesions (neuritis). [EU] Neutrophil: Having an affinity for neutral dyes. [EU] Nucleosomes: The repeating structural units of chromatin, each consisting of approximately 200 base pairs of DNA wound around a protein core. This core is composed of the histones H2A, H2B, H3, and H4. [NIH] Oedema:
The presence of abnormally large amounts of fluid in the
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intercellular tissue spaces of the body; usually applied to demonstrable accumulation of excessive fluid in the subcutaneous tissues. Edema may be localized, due to venous or lymphatic obstruction or to increased vascular permeability, or it may be systemic due to heart failure or renal disease. Collections of edema fluid are designated according to the site, e.g. ascites (peritoneal cavity), hydrothorax (pleural cavity), and hydropericardium (pericardial sac). Massive generalized edema is called anasarca. [EU] Osteotomy: The surgical cutting of a bone. [EU] Ovariectomy: The surgical removal of one or both ovaries. [NIH] Panniculitis: An inflammatory reaction of the subcutaneous fat, which may involve the connective tissue septa between the fat lobes, the septa lobules and vessels, or the fat lobules, characterized by the development of single or multiple cutaneous nodules. [EU] Parathyroid: 1. situated beside the thyroid gland. 2. one of the parathyroid glands. 3. a sterile preparation of the water-soluble principle(s) of the parathyroid glands, ad-ministered parenterally as an antihypocalcaemic, especially in the treatment of acute hypoparathyroidism with tetany. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Perivascular: Situated around a vessel. [EU] Pharmacologic: Pertaining to pharmacology or to the properties and reactions of drugs. [EU] Phosphorylation: The introduction of a phosphoryl group into a compound through the formation of an ester bond between the compound and a phosphorus moiety. [NIH] Polyarthritis: An inflammation of several joints together. [EU] Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Prothrombin: Factor II. [EU] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychiatry:
The medical science that deals with the origin, diagnosis,
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prevention, and treatment of mental disorders. [NIH] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Serositis: Inflammation of a serous membrane. [NIH] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Synergistic: Acting together; enhancing the effect of another force or agent. [EU]
Synovial: Of pertaining to, or secreting synovia. [EU] Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU] Trypanosoma: A genus of flagellate protozoans found in the blood and lymph of vertebrates and invertebrates, both hosts being required to complete the life cycle. [NIH] Tyrosine: A non-essential amino acid. In animals it is synthesized from phenylalanine. It is also the precursor of epinephrine, thyroid hormones, and melanin. [NIH] Viral: Pertaining to, caused by, or of the nature of virus. [EU]
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CHAPTER 5. PATENTS ON LUPUS Overview You can learn about innovations relating to lupus by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.24 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available to patients with lupus within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available to patients with lupus. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information.
24Adapted
from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm.
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Patents on Lupus By performing a patent search focusing on lupus, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on lupus: ·
Use of delta5-androstene-3beta-ol-7, 17-dione in the treatment of lupus erythematosus Inventor(s): Lardy; Henry A. (Madison, WI), Weeks; Charles E. (Battle Creek, MI) Assignee(s): Humanetics Corporation (Chanhassen, MN) Patent Number: 6,372,732 Date filed: December 4, 2000 Abstract: Lupus erythematosus can be treated by administering therapeutic amounts of delta-5-androstene-3-beta-ol-7,17-dione and its metabolizable precursors, which are not appreciably metabolized in vivo to androgens, estrogens or dehydroepiandrosterone. Such treatment can be prophylactic, ameliorative or curative in nature. Excerpt(s): This invention broadly relates to treatment strategies for lupus erythematosus. More specifically, the invention relates to prophylactic, ameliorative and curative drug therapies for lupus erythematosus. ... Lupus erythematosus is an autoimmune disorder which may, but does not always, affect many different organ systems in an affected individual. Lupus erythematosus (hereinafter "lupus") may affect the heart, lungs, skin, joints, kidneys, nervous system, lymph gland system, blood cells and/or blood vessels. Certain forms of lupus affect only or predominantly the skin. These forms of lupus are the most visible manifestations of the disease. ... Women are more susceptible to lupus than men. Over 90% of lupus patients are females aged 13-40 years. Laboratory tests for the presence of lupus include the LE Cell Test, the Anti-Nuclear Antibody Test, and the test for Anti-DNA-Antibodies. Lupus is, however, often recognized by particular clinical manifestations including: (i) arthritis (occurring in 90-95% of persons with systemic
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lupus), (ii) skin changes, such as a photosensitive induced "butterfly" rash across the bridge of the nose, across the cheeks and/or beneath the eyes, and/or red, raised and scaly patches, known as discoid lupus, anywhere on the body (occurring in 75-80% of persons with lupus), (iii) hematologic abnormalities, such as anemia, leukopenia, and thrombocytopenia (occurring in about 50% of persons with lupus), (iv) kidney impairment (occurring in about 50% of persons with lupus), (v) heart or lung disease, such as an irritation of the heart or lung lining causing pericarditis or pleurisy (occurring in about 30% of persons with lupus), and (vi) neuropsychiatric changes (occurring in about 10% to 20% of persons with lupus). Web site: http://www.delphion.com/details?pn=US06372732__ ·
Peptides for the production of preparations for the diagnosis and therapy of systemic lupus Inventor(s): Zeppezauer; Michael (Scheidt, DE), Schonberger; Arno (Hamburg, DE), Cebecauer; Ladislav (Piestany, CS) Assignee(s): Symbiotec Gesellschaft zur Erforschung und Entwicklung auf dem Gebiet der (Herborn, DE) Patent Number: 6,369,203 Date filed: September 16, 1992 Abstract: Peptides are proposed with antigenic or immunogenic determinants, which result from autoantibodies in the body fluids of patients, who are suffering from systemic lupus erythematosus (SLE). In the case of the peptides it is preferably a question of the C terminus of H1 with the sequence section 187-211 and the N termini of H2B with the sequence sections 1-35 and 36-76, which are capable of cross reactions with the autoantibodies (anti-histone-antibodies). The invention furthermore provides ways of forming monoclonal antibodies and antiidiotypical antibodies, which are directed against autoantibodies. The diagnosis of SLE is possible in accordance with the invention with a high degree of certainty and the monoclonal antibodies directed against the autoantibodies are suitable for the production of medicaments for the therapy of SLE. Excerpt(s): The present invention relates to peptides with antigenic or immunogenic determinants, which may be recognized by autoantibodies in the body fluids of patients, who are suffering from systemic lupus erythematosus (SLE). ... Diseases of the "rheumatic group" are characterized by a large number of clinical phenomena and by a wide spectrum of autoantibodies. The latter are directed against various
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different components of normal cells. The said diseases include systemic lupus erythematosus (SLE) which may occur spontaneously or may be induced by medicaments. In the case of SLE the occurrence of autoantibodies is particularly frequent, which are directed against components of the cell nucleus (antinuclear antibodies, ANA's), these including inter alia double strand desoxyribonucleic acid (DS-DNA) and histone proteins, ribonucleic acid (RNA), complexes of DNA and histones as well as enzymes. Histones consist of a number of classes of proteins, the so-called core histones H1A, H2B, H3 and H4, which are found in the nucleosomes, and the linker histones H1 and H5, to which linking functions are attributed in the formation of chromatin. Many attempts have been made to correlate the frequency of autoantibodies, which are directed against special antigens, with certain rheumatic syndromes. ... Of the 122 sera 68% were positive with respect to the peptide combination. The 122 sera were composed of 80 SLE and 42 rheumatic sera. Of the 80 lupus patients 80% were H1-CT and E1 positive, whereas of the 42 rheumatic patients 45% were still H1-CT and E1 positive. Therefore the N terminal ranges of H2B (1-31) and the C terminal range of H1 (187-211) constituted the main antigenic determinants detected of autoantibodies of the lupus patients. The combination of these two peptides may therefore function as a distinguishing criterion for the classification of SLE patients and separating them from rheumatic patients. Web site: http://www.delphion.com/details?pn=US06369203__ ·
Methylated, SMD homologous peptides, reactive with the antibodies from sera of living beings affected with systemic lupus erythematosus Inventor(s): Meheus; Lydie (Merelbeke, BE), Union; Ann (Aalter, BE), Raymackers; Joseph (Eke, BE), Luhrmann; Reinhard Georg (Marburg, DE) Assignee(s): Innogenetics N.V. (Ghent, BE) Patent Number: 6,362,007 Date filed: May 10, 1999 Abstract: The present invention relates to a method of producing certain peptides containing methylated arginines that are followed by a glycine residue and that constitute immunogenic determinants of antibodies present in sera from patients with systemic lupus erythematosus, or Epstein-Barr virus and wherein the methylation is a prerequisite for reacting with said antibodies. The invention also relates to the use of said peptides for diagnosis and treatment of systemic lupus erythematosus
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and related diseases, and diseases in which Epstein-Barr virus has been implicated. Excerpt(s): The present invention relates to a method of producing certain peptides containing methylated arginines that are followed by a glycine residue and that constitute immunogenic determinants of antibodies present in sera from patients with systemic lupus erythematosus, or Epstein-Barr virus and wherein the methylation is a prerequisite for reacting with said antibodies. The invention also relates to the use of said peptides for diagnosis and treatment of systemic lupus erythematosus and related diseases, diseases in which Epstein-Barr virus has been implicated. ... Systemic lupus erythematosus is an autoimmune disease, in which the patient develops antibodies that react with many tissues of his own body. Dominant antibodies are directed against components of the cell nucleus, with epitopes that may be found in DNA, and in proteins that constitute small ribonucleoprotein particles (snRNPs). ... The first laboratory test ever devised for this disease was the LE (lupus erythematosus) cell test. This test has to be repeated many times, before it results in a positive reaction in about 90% of the people with systemic lupus erythematosus. Also, the LE cell test is not specific for lupus, and can be positive in up to 20% of the people with rheumatoid arthritis, in some patients with other rheumatic conditions like Sjogren's syndrome or scleroderma, in patients with liver disease, and in persons taking drugs such as hydralazine and procainamide. The ANA test, which detects antibodies against nuclear antigens, is more specific for lupus than the LE test, and is positive in many patients that suffer from systemic lupus erythematosus. As with the LE test, a positive ANA is not diagnostic for lupus since the test may also be positive in people with scieroderma, dermatomyositis, rheumatoid arthritis, Sjogren's syndrome, in patients treated with certain drugs, or in patients suffering from infectious mononucleosis, liver disease, malaria etc. For these reasons and because the summed tests are expensive, new tests have been developed which are very helpful in the diagnosis of SLE. These include the anti-DNA antibody test, the anti-Sm antibody test, the anti-RNP antibody test, the anti-Ro antibody test, and tests which measure serum complement levels. Often, correct diagnosis will depend on the interpretation of many separate tests and symptoms. Web site: http://www.delphion.com/details?pn=US06362007__
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·
Use of a peptide compound in the treatment of systemic lupus erythematosus Inventor(s): Marino; Maria (Caserta, IT), Rossi; Maria (Portici, IT), Fassina; Giorgio (Milan, IT) Assignee(s): Tecnogen S.C.p.A. (Piana di Monte Verna, IT) Patent Number: 6,303,577 Date filed: May 4, 1999 Abstract: Use of a peptide compound of formula(H.sub.2 N-X.sub.1 -ThrX.sub.2 -CO).sub.n -R (I)whereinX.sub.1, X.sub.2, n and R have the meanings stated in the description for preparing a pharmaceutical composition useful in the treatment of Systemic Lupus Erythematosus. Excerpt(s): This invention relates to the use of a peptide compound for preparing a pharmaceutical composition useful in the treatment of Systemic Lupus Erythematosus as well as a method of treating a patient suffering from Systemic Lupus Erythematosus. ... Systemic Lupus Erythematosus (SLE) is a chronic, remitting and relapsing, multisystem autoimmune disease that affects predominantly women, with an incidence 1:700 in women between 20 and 60 years old, while the female:male ratio is 10:1. ... So far, Systemic Lupus Erythematosus has been treated with aspirin and other anti-inflammatory drugs, or with antimalarial drugs. Web site: http://www.delphion.com/details?pn=US06303577__
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Genetic marker test for lupus Inventor(s): Tsao; Betty P. (Los Angeles, CA), Cantor; Rita M. (Rolling Hills Estates, CA), Rotter; Jerome I. (Los Angeles, CA) Assignee(s): Cedars-Sinai Medical Center (Los Angeles, CA), The Regents of the University of California (Oakland, CA) Patent Number: 6,280,941 Date filed: March 29, 1999 Abstract: Disclosed is a genetic testing method for diagnosing systemic lupus erythematosus (SLE) in a human subject. The method is related to amplifying nucleic acids from human tissue samples and analyzing for a variant allele of a gene encoding poly(ADP-ribosyl)transferase expression (PARP), which is diagnostic of SLE or indicates a genetic predisposition for developing SLE. Also disclosed are useful oligonucleotide primers, primer sets and genetic testing kits for detecting a genetic predisposition for developing SLE.
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Excerpt(s): This invention relates to the medical arts. In particular, it relates to a method of detecting a genetic predisposition to systemic lupus erythematosus. ... Systemic lupus erythematosus (SLE), commonly known as lupus, is an autoimmune rheumatic disease characterized by deposition in tissues of autoantibodies and immune complexes leading to tissue injury (B. L. Kotzin, Systemic lupus erythematosus, Cell 85:303-06 [1996]). In contrast to autoimmune diseases such as multiple sclerosis and type 1 diabetes mellitus, SLE potentially involves multiple organ systems directly, and its clinical manifestations are diverse and variable. (Reviewed by B. L. Kotzin and J. R. O'Dell, Systemic lupus erythematosus, In: Samler's Immunologic Diseases, 5th ed., M. M. Frank et al., eds., Little Brown & Co., Boston, pp. 667-97 [1995]). ... For example, some patients may demonstrate primarily skin rash and joint pain, show spontaneous remissions, and require little medication. At the other end of the spectrum are patients who demonstrate severe and progressive kidney involvement that requires therapy with high doses of steroids and cytotoxic drugs such as cyclophosphamide. (B. L. Kotzin [1996]). The serological hallmark of SLE, and the primary diagnostic test available until now, is elevated serum levels of IgG antibodies to constituents of the cell nucleus, such as double-stranded DNA (dsDNA), single-stranded DNA (ss-DNA), and chromatin. Among these autoantibodies, IgG antidsDNA antibodies play a major role in the development of lupus glomerulonephritis (GN). (B. H, Hahn and B. Tsao, Antibodies to DNA, In: Dubois' Lupus Erythematosus, 4th ed., D. J. Wallace and B. Hahn, eds., Lea and Febiger, Philadelphia, pp. 195-201 [1993]; Ohnishi et al., Comparison of pathogenic and nonpathogenic murine antibodies to DNA: Antigen binding ard structural characteristics, Int. Immunol. 6:81730 [1994]). Glomerulonephritis is a serious condition in which the capillary walls of the kidney's blood purifying glomeruli become thickened by accretions on the epithelial side of glomerular basement membranes. The disease is often chronic and progressive and may lead to eventual renal failure. Web site: http://www.delphion.com/details?pn=US06280941__ ·
Conserved anti-DNA antibody idiotype associated with nephritis in murine and human lupus Inventor(s): Weisbart; Richard (Los Angeles, CA) Assignee(s): The Regents of the University of California (Oakland, CA) Patent Number: 6,232,444 Date filed: April 8, 1996
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Abstract: Methods and antibody compositions are provided for the diagnosis and treatment of lupus nephritis. By employing B-cells of a lupus nephritis host with a fusion partner, antibodies can be obtained, which may serve as immunogens for the production of antiidiotypic antibodies, which may then be used for diagnosis and therapy of lupus nephritis. Excerpt(s): The field of this invention is the diagnosis and treatment of nephritis associated with systemic lupus erythematosus. ... Antibodies to deoxyribose nucleic acid (DNA) are the hallmark of systemic lupus erythenotesus (SLE) and are associated with the development of kidney disease (nephritis). However, anti-DNA antibodies are heterogeneous and the structural basis for pathogenic anti-DNA antibodies has remained elusive. Idiotypes are structural determinants on or near antibody binding sites recognized by a second (antiidiotype) antibody. Antiidiotype antibodies can be used to identify unique structural features of potentially pathogenic anti-DNA antibodies. Although several antiDNA antibody antiidiotypes have been produced, an anti-idiotype has not been produced that characterizes unique structural features of antiDNA antibodies that are conserved in both murine and human lupus associated with nephritis. ... Because of the substantial interest in being able to diagnose and treat lupus associated with nephritis, various efforts have been made to determine the causative agent of nephritis associated lupus and to find therapeutic techniques. It is therefore of interest to be able to develop antibodies which are capable of recognizing disease related anti-DNA antibodies. Web site: http://www.delphion.com/details?pn=US06232444__ ·
Peptides for the treatment of systemic lupus erythematosus Inventor(s): Naparstek; Yaakov (Jerusalem, IL) Assignee(s): Hadasit Medical Research Services & Development Company Ltd. (Jerusalem, IL) Patent Number: 6,228,363 Date filed: September 20, 1999 Abstract: A method is disclosed for treating systemic lupus erythematosus in a mammalian subject, comprising administering to said subject an effective dose of at least one laminin peptide, or an analog or a derivative thereof. In one exemplary embodiment, the laminin peptide is selected from the group consisting of R38, and claimed R38 analogs and derivatives thereof including 5200, 5104, 5105, 5106, 5107, 5108, 5109, and 5110. The laminin peptides of the present invention may be prepared by
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known chemical synthetic methods or by biotechnological methods. Assays useful for the diagnosis of and following pathological activity course of systemic lupus erythematosus in patients suffering therefrom. Excerpt(s): This invention relates to the use of laminin peptides and laminin derivatives, including R38 peptide and related analogs for the treatment and detection of systemic lupus erythematosus. ... Systemic lupus erythematosus (SLE) is an autoimmune disease involving multiple organs. Through the involvement of the kidneys in the autoimmune inflammatory process lupus glomerulonephritis is a major cause of morbidity and mortality in this disease (Alarcon-Segovia D. In: Primer on the Rheumatic diseases. Ed. Schumascher H. R. Arthritis Foundation, Atlanta, Ga., (1988) pp. 96-100). ... Serologically, the disease is characterized by the occurrence of a variety of autoantibodies in the serum, of which the most prominent are the anti-DNA auto antibodies (Naparstek Y et al Annu. Rev. Immunol. (1993) 11 79-104). Although low titers of anti-DNA antibodies may occur in various inflammatory and autoimmune diseases, high levels are found mainly in SLE, and the combination of high anti-DNA antibodies with low complement levels is virtually diagnostic of SLE (Wallace D. J. et al In: Dubois' Lupus erythematosus. Lea and Febiger, Philadelphia, 1993). Web site: http://www.delphion.com/details?pn=US06228363__ ·
Use of annexins as a lupus anticoagulant control or standard in clotting tests Inventor(s): Kraus; Michael (Marburg, DE) Assignee(s): Dade Behring Marburg GmbH (Marburg, DE) Patent Number: 6,194,214 Date filed: August 10, 1998 Abstract: The invention relates to a process for the production of plasmas with added annexins for use as a control or standard in all functional clotting tests which are used for the detection of a lupus anticoagulant. Excerpt(s): The invention relates to a process for the production of plasmas for use as a control or standard in all functional clotting tests which are used for the detection of a lupus anticoagulant. ... Lupus anticoagulants are immunoglobulins and belong to the acquired autoantibodies type. They are directed against phospholipids or phospholipid/protein complexes and prolong the clotting time in customary diagnostic clotting tests (see Triplett D., et al. Hematologic Pathology 1988; 2: 121-143). These immunoglobulins are to be
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differentiated from other autoantibodies likewise against lipids, in particular cardiolipins. Both groups are clinically assigned to the antiphospholipid syndrome (APS) which manifests itself in thromboses and an increase in birth complications (miscarriages). The pathological mechanism of the lupus anticoagulants is still unclarified for several reasons. Firstly, the specificity of the occurring antibodies and thus the mechanism of action is individually different from patient to patient. Secondly, the subclasses of the immunoglobulins (IgM, IgG, IgA) and the antibody titers vary. Thirdly, there is a paradox between the determination of the lupus anticoagulant and clinical manifestation: a prolongation of the clotting time in in vitro tests, as is caused by lupus anticoagulant, points to an increased proneness to bleeding, in vivo, however, it is manifested in an increased proneness to thromboses. ... The diagnosis of a lupus anticoagulant is therefore restricted to a phenomenological, description of the behavior of a plasma sample in various clotting tests according to the recommendations of international committees (Brandt, J. T. et al., Thrombosis Haemostasis 1995; 74: 11851190). These tests are the activated partial thromboplastin time (APTT), the kaolin clotting time (KCT) the dilute thromboplastin time (dPT) and the Russell's viper venom time (RVVT). A prolongation of the clotting time in these tests, however, is also obtained by a factor deficiency, which is why in the so-called plasma exchange test the pathological sample is mixed with normal plasma and as a rule determined in the APTT. A factor deficiency, as a rule, is already compensated for in a substitution of 50% by mixing with the normal plasma, while in the presence of a lupus anticoagulant pathological results are still obtained. Furthermore, the phospholipid dependence is to be checked, which is carried out using the same reagents, but with different concentrations of phospholipids. Furthermore to be differentiated are autoantibodies against individual clotting factors, which are likewise not compensated for by 1+1 mixing with a normal plasma. As a rule, these factor antibodies, however, only act in one of the two pathways of the clotting system (in particular socalled Factor VIII inhibitors) and are recognized by the comparison of the various pathways, i.e. by the comparison of the abovementioned tests (APTT for the intrinsic, PT for the extrinsic pathway). Web site: http://www.delphion.com/details?pn=US06194214__
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Nucleolus autoantigenic marker for systemic lupus erthyematosus Inventor(s): Rattner; Jerome Bernard (35 Point McKay Court, Calgary, Alberta, CA), Whitehead; Clark (1894 20thSt. NW., Rochester, MN 55901) Assignee(s): none reported Patent Number: 6,177,254 Date filed: December 15, 1998 Abstract: A novel nucleolus protein has been identified and cloned using human autoimmune serum. Its cDNA and amino acid sequences have been determined and are disclosed. This antigenic protein, termed ASE-1, has an approximate molecular mass of 55 kDa. Immunoblot analysis indicates that both the native protein and the in vitro translation products of the cDNA migrate on SDS-PAGE at an apparent molecular mass of 90 kDa. Indirect immunofluorescence analysis using antibodies generated to cloned regions of ASE-1 indicates that this protein occurs at the fibrillar centers of the nucleolus in the putative sites of rDNA transcription. During cell division ASE-1 localizes to the nucleolus organizer regions of the chromosomes, where it is closely associated with RNA polymerase 1. As an autoantigenic nucleolar protein, ASE-1 has been found to be a reliable serum marker for systemic lupus erthyematosus (SLE). This finding makes ASE-1 useful in the clinical detection and characterization of the disease. To identify the presence of SLE in an individual patient, a serum samples is taken and screened against the cloned ASE-1 protein to identify sera with anti-ASE-1 autoantibodies. This screening can be done using an ELISA assay, western blot techniques, or by binding the antigen to microspheres and identifying reactive sera by flow cytometry. Excerpt(s): The invention pertains to the discovery of a novel human autoantigen. More particularly, the autoantigen discovered has been sequenced and is useful in the identification of individuals with systemic lupus erthyematosus. ... Systemic lupus erythematosus (SLE), commonly known as Lupus, is an autoimmune disease characterized by dysregulation of the immune system resulting in the production of antinuclear antibodies, the generation of circulating immune complexes, and the activation of the complement system. The immune complexes build up in the tissues and joints causing inflammation, and degradation to both joints and tissues. While the word "systemic" correctly suggests that the disease effects the entire body and most organ systems, the disease most often involves inflammation and consequent injury to the joints, skin, kidney, brain, the membranes in body cavities, lung, heart, and gastrointestinal tract. An individual with SLE often experiences unpredictable acute episodes or "outbreaks" and equally unexpected remissions. The pathologic hallmark of the disease is recurrent,
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widespread, and diverse vascular lesions resembling a rash or changes on the surface of the skin. ... Physicians have known Lupus since 1828 when it was first described by the French dermatologist, Biett. Early studies were simply descriptions of the disease, with emphasis on the skin rashes typically present in those afflicted with the disease as well as other easily visible symptoms. Forty-five years later a dermatologist named Kaposi noted that some patients with lupus erythematosus (LE) skin lesions showed signs of affected internal organs. In the 1890s, Sir William Osler, a Canadian physician, observed that SLE could affect internal organs without the occurrence of skin changes. In 1948, Dr. Malcolm Hargraves of the Mayo Clinic isolated and described the particular morphology of the LE cell. This cell was found in the blood of patients with SLE. Hargraves' discovery has enabled physicians to identify many more cases of SLE by using a simple blood test. As a result, the number of SLE cases diagnosed has steadily risen. Web site: http://www.delphion.com/details?pn=US06177254__ ·
Identification of an exogenous intra-erythrocytic bacterium in patients having systemic lupus erythematosus, and treatment Inventor(s): Kallick; Charles A. (16411--135th St., Lemont, IL 60439) Assignee(s): none reported Patent Number: 5,972,309 Date filed: August 11, 1998 Abstract: Intra-erythrocytic exogenous bacterial structures or parasites seen by giemsa and phase contrast microscopy in several patients with systemic lupus erythematosus (SLE) and not in controls were identified as bacteria. Treatment of an SLE patient is contemplated with an antibacterial amount of a rifamycin in conjunction with an antibacterial amount of either a macrolide such as clarithromycin or a third generation cephalosporin such as cefpodoxime that is itself more preferably used in conjunction with an adjuvant amount of probenecid. Excerpt(s): The present invention relates to identification of the presence of an exogenous structure within human erythrocytes or bone marrow cells and treatment thereof, and more particularly to an assay for the presence of an exogenous bacterial structure or parasite within the erythrocytes of patients having systemic lupus erythematosus (SLE) and treatment of such patients to lessen or eliminate the erythrocytic or bone marrow load of those bacterial structures. ... Systemic lupus erythematosus (SLE) is a protean disease of unknown etiology which affects multiple organs. Lahita, R. G. Systemic Lupus Erythematosus,
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Churchill, Livingston, N.Y. (1987) page XXIX. Although there is a marked similarity to an infectious entity, an exhaustive search for an etiologic agent has not yielded any proven candidates that fulfill the criteria for causation of this disease. Crow et al., "Etiologic Hypothesis for Systemic Lupus Erythematosus," in Lahita Systemic Lupus Erythematosus, Churchill, Livingston, N.Y. (1987) page 51 ff. There is general agreement that tissue and organ injury in SLE is mediated by immune phenomena. Unexplained at this time is the predilection of SLE for females. Taurog et al., Intern. J. Derm., 20:149-158 (1981). ... Early descriptions of SLE before the advent of suppressive therapy suggested sepsis, and included fever, striking constitutional symptoms and high mortality. Crow et al., "Etiologic Hypothesis for Systemic Lupus Erythematosus," in Lahita Systemic Lupus Erythematosus, Churchill, Livingston, N.Y. (1987) page 54. Recently, many viral etiologic agents have been sought; none have been convincingly demonstrated. Pincus, Arthr & Rheum, 20:149-158 (1982). More recently the characterization of soluble products of bacteria and mycoplasmas with unique capacities to perturb immune systems have led to new considerations in regard to the infectious trigger of SLE. Web site: http://www.delphion.com/details?pn=US05972309__ ·
Peptides of the antigen Sm-D and their use, in particular for the diagnostics of systemic lupus erythematosus (SLE) Inventor(s): Hiepe; Falk (Berlin, DE), Riemekasten; Gabriele (Berlin, DE), Marell; Jeannette (Berlin, DE), Burmester; Gerd-Rudiger (Berlin, DE) Assignee(s): Imtec Immundiagnostika GmbH () Patent Number: 5,945,105 Date filed: October 18, 1996 Abstract: Peptides of the antigen Sm-D and their use, in particular for the diagnostics of the SLE. The invention relates to peptides of the antigen Sm-D, comprised of 35 to 45 amino acids, which form a conformation epitope and which are capable of binding autoantibodies, such as they occur in connection with systemic lupus erythematosus (SLE). Particularly preferred is the peptide of 37 amino acids with the structure VEPKVKSKKREAVAGRGRGRGRGRGRGRGRGRGGPRR (SEQ ID NO:3) and its mutants and variants, respectively. Excerpt(s): The invention relates to the peptides of the antigen Sm-D, which are recognized by antibodies in biological fluids, in particular of antibodies which are present in the body fluids of patients which suffer from systemic lupus erythematosus (SLE). ... Lebrun and coworkers carried out immunization tests at certain breeds of mice with
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deoxyribonucleic acid DNA, wherein they coupled the deoxyribonucleic acid DNA with a fusion protein, rich in arginine, and they could thereby generate a lupus nephritis (P. Lebrun et al, Lupus 1994; 3: 47-53). They also concluded that certain proteins, binding to the deoxyribonucleic acid DNA, are necessary in order to generate an autoimmune reaction. ... In addition to the antibodies (Ad) against native or double-stranded deoxyribonucleic acid (dsDNA), anti-Sm antibodies are deemed to be a diagnostic marker for the systemic lupus erythematosus (SLE). In addition, a pathogenic role is attributed to the anti-Sm antibodies in the generation of damages to organs. The proof of the anti-Sm antibodies succeeds in Europe, contrary to the anti-ds-DNA antibodies, only in case of relatively few patients, whereas in the United States it can be determined in one third of the patients with SLE. The cause of this is considered to be a different ethnic composition of the population (N. Abuaf et al. Eur. J. Clin. Invest. 1990; 20: 354-359). Web site: http://www.delphion.com/details?pn=US05945105__ ·
Method for treatment of Lupus nephritis Inventor(s): Clark; William F. (1132 Richmond Street, London, Ontario, CA), Parbtani; Anwar (418 Rippleton Rd., London, Ontario, CA) Assignee(s): none reported Patent Number: 5,837,256 Date filed: December 19, 1996 Abstract: It has been found that by administering secoisolariciresinol ›2,3bis(3-methyl-4-hydroxybenzyl)butane-1,4-diol! from flaxseed in substantially pure form to a human or non-human animal, lupus nephritis can be controlled. The secoisolariciresinol (Seco) may be used per se or in the form of secoisolariciresinol diglucoside (SDG). Both compounds may be extracted from flaxseed and the SDG converts to Seco in the gut of a human or animal. Excerpt(s): This invention relates to a method for the treatment of lupus nephritis. ... Lupus nephritis is considered in medical circles to be the "classical" auto-immune disease in which the patient's immune system attacks his/her own organs. It has been estimated that 45-75% of lupus patient's eventually suffer from some form or other of kidney damage. Lupus varies greatly in severity from mild cases requiring minimal intervention to those in which significant damage occurs to vital organs such as lungs, kidneys, heart and brain, and which ultimately can be fatal. Lupus is predominantly a female disease, an approximate female to male ratio being 9:1. In North America, it is estimated to affect 1 in 500
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female mainly between the age of 20 to 40 years. Treatment is directed at controlling the symptoms with the hope of putting the disease into remission. There are several chemotherapeutic agents in commercial use and available for remedial purposes. Most of these agents are not without side effects, some of which are severe and debilitating to the patient. Some non-steroidal anti-inflammatory agents may cause stomach upsets and changes in kidney function which can mimic some lupus symptoms themselves. Some anti-malarial drugs, when required at high dosage levels over prolonged time frame, may accumulate in the retina and cause loss of vision. Certain steroidal preparations are used for their antiinflammatory activity. These can exhibit side effects such as pronounced swelling of the face and abdomen, weight gain, excessive growth of body hair, cataracts, osteoporosis and heart attacks. Use of immunosuppressants can have serious side effects such as changes in bone marrow, increased risk of infection to which the body normally shows resistance and a slight increase in the risk of developing certain types of cancer. There is no known cure for lupus. ... Several reports have appeared in the scientific and medical literature concerning the ability of ground flaxseed to act as a mediator in the partial control of Lupus nephritis. At a level of intake of up to 30 grams per day, ground flaxseed has been shown to reduce the total cholesterol and LDL cholesterol levels by 12% and improve renal function in patients with lupus nephritis ›(Clark, Parbtani et al., (1995) Flaxseed: A potential treatment for lupus nephritis, Kidney International 48: 475-480!. Beyond this intake level, side effects are evident such as Taxation probably due to increased fibre/mucilage intake. Web site: http://www.delphion.com/details?pn=US05837256__ ·
Lupus disease immunoassay methods Inventor(s): Naparstek; Yaakov (Jerusalem, IL) Assignee(s): Hadasit Medical Research Services & Development Co., Ltd. (Jerusalem, IL) Patent Number: 5,789,260 Date filed: September 17, 1996 Abstract: The invention provides an immunoassay reagent for the binding and detection of antibodies found in the urine of lupus disease patients, comprising extracellular matrix. Excerpt(s): More particularly, the present invention relates to a novel reagent for binding and detection of antibodies found in the urine of lupus disease patients, and to kits and methods incorporating the same.
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... Systemic lupus erythematosus (SLE) is a disease of unknown etiology, in which tissues and cells are damaged by deposition of pathogenic autoantibodies and immune complexes. Ninety percent of cases are in women, usually of childbearing age, but children, men, and the elderly can be affected. In the United States, the prevalence of SLE in urban areas varies from 15 to 50 per 100,000; it is more common and more severe in blacks than in whites. Hispanic and Asian populations are also susceptible. ... As stated above, systemic lupus erythematosus is characterized by the occurrence of a variety of autoantibodies. Many of these antibodies bind to intracellular antigens (i.e., nuclear antigens) in vitro; however, their in vivo ligand is not defined. Web site: http://www.delphion.com/details?pn=US05789260__ ·
Snake venom lupus anticoagulant protein Inventor(s): Lian; Eric Chun-Yet (Coral Gables, FL) Assignee(s): Eric Chun-Tet Lian (Coral Gables, FL) Patent Number: 5,763,403 Date filed: October 31, 1995 Abstract: A lupus anticoagulant like protein obtained from Agkistrodon halys brevicaudus venom, methods and tests for detecting the presence of lupus anticoagulant in blood and methods of treating antiphospholipid syndrome and thrombotic disorders using the protein are disclosed. Excerpt(s): This invention relates to a lupus anticoagulant like protein, particularly a lupus anticoagulant like protein from Agkistrodon halys brevicaudus venom, to methods and tests for detecting the presence of lupus anticoagulant and methods of treating antiphospholipid syndrome and thrombosis using the protein. ... Lupus anticoagulants (LA) are immunoglobulins that interfere with blood coagulation. Lupus anticoagulants are found in the blood of many people. This includes healthy people and those not suffering from lupus erythematosus. They may also be found in people having other immune system disorders such as viral infections including AIDS, tumors such as lymphoma and prostatic carcinoma, rheumatoid arthritis and the like. Such persons having lupus anticoagulants in their blood system may or may not display symptoms. However, they may suffer from disorders such as antiphospholipid syndrome, thrombosis, spontaneous abortion, thrombocytopenia, pulmonary hypertension and the like. Accordingly, there is a great need to accurately determine the presence of lupus anticoagulants in the blood stream and develop methods of treating
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adverse consequences of the presence of lupus anticoagulants, such as antiphospholipid syndrome, thrombotic disorders such as venous thrombosis, coronary arterial disease such as myocardial infarction (MI), cerebral vascular disease such as stroke, peripheral arterial disease, disseminated intravascular coagulation (DIC) and the like. ... Not only has it been a longstanding problem in the art to provide a reliable and consistent means for testing for the presence of lupus anticoagulants, it has further been a longstanding problem to provide effective methods of treatment of adverse symptoms exhibited in the presence of lupus anticoagulants, such as antiphospholipid syndrome, thrombosis and the like. These maladies can be highly dangerous to humans and can result in death. It is therefore quite important that treatments overcome such potentially fatal afflictions. Web site: http://www.delphion.com/details?pn=US05763403__ ·
Test for lupus anticoagulant Inventor(s): Triplett; Douglas A. (South Muncie, IN), Stocker; Kurt (Aesch, CH) Assignee(s): Pentapharm AG (Basel, CH) Patent Number: 5,705,198 Date filed: June 6, 1995 Abstract: It was found that the use of a phospholipid dependent prothrombin activator purified from the venom of snakes belonging to the Elapidae family, especially members of the Oxyaranus and Psuedonaja genera is most useful in tests for the determination of Lupus Anticoagulant. Based on this, several clotting, chromogenic aria immunochromogenic tests have been developped. Excerpt(s): The present invention relates to a phospholipid dependent prothrombin activator, to a method for its purification, and to a test for the detection of Lupus Anticoagulant using the activator. ... The lupus anticoagulant (LA) is an immunoglobulin (IgG, IgM, or a mixture of both) which interferes with one or more of the in vitro phospholipid dependent tests of coagulation (activated partial thromboplastin time ›APTT!; prothrombin time ›PT!; dilute Russell Viper Venom Time ›dRVVT!). In contrast to specific inhibitors of coagulation proteins, LA has no reactivity with any of the individual Coagulation factors. The name is a misnomer since the vast majority of patients do not have underlying systemic lupus erythematosus (SLE). More commonly, LA is secondary to infections, drugs (e.g. chlorpromazine, quinidine, procainamide) or it may be seen in an autoimmune disease which has recently been
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described: Primary Antiphospholipid Antibody Syndrome. ... Paradoxically, LA is not associated with clinical bleeding unless there is some associated hemostatic defect (e.g. thrombocytopenia). Approximately 30 to 40% of patients with LA have a history of venous and arterial thromboembolic events. For a number of years, there has been much discussion as to whether LA was causative, a consequence, or coincident with thrombosis. More recent work in animal models would suggest that indeed LA is a cause of a thrombotic predisposition. Other clinical-manifestations of LA include recurrent fetal loss, intrauterine fetal growth retardation, and prematurity. Also, LA may be associated with thrombocytopenia or autoimmune hemolytic anemias. Two recent excellent reviews discuss LA and its closely related antibody: anticardiolipin antibodies ›Tripleft D. A., Brandt J. T., Lupus Anticoagulants: Misnomer, Paradox, Riddle Epiphenomenon. Hematol. Pathol. 2, 121-143, 1988; Love P. E., Santoro S. A., Antiphospholipid Antibodies: Anticardiolipin and the Lupus Anticoagulant in Systemic Lupus Erythematosus (SLE) and Non-SLE Disorders. Ann. Int. Med. 112, 682-698, 1990!. Web site: http://www.delphion.com/details?pn=US05705198__
Patent Applications on Lupus As of December 2000, U.S. patent applications are open to public viewing.25 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years). The following patent applications have been filed since December 2000 relating to lupus: ·
Use of anti-gp-39 antibodies for treatment and/or reversal of lupus and lupus associated kidney disease Inventor(s): Noelle, Randolph J. ; (Cornish, NH), Burns, Christopher M. ; (Lyme, NH) Correspondence: Pillsbury Winthrop LLP; Intellectual Property Group; East Tower, Ninth Floor; 1100 New York Avenue, N.W.; Washington; DC; 20005-3918; US Patent Application Number: 20020058037 Date filed: May 16, 2001 Abstract: A method of treating lupus using anti-gp39 antibodies or fragments is provided. Such treatment has been shown to reverse disease,
25
This has been a common practice outside the United States prior to December 2000.
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and in particular lupus-associated kidney disease, the major killer of lupus subjects. Excerpt(s): The present invention relates to a counter-receptor, referred to alternatively in the literature as CD40CR, gp39, or most recently CD154 for the CD40 B-cell antigen, and to soluble ligands for this receptor, including fusion molecules comprising at least a portion of CD40 protein. It is based, at least in part, on the discovery that a soluble CD40/immunoglobulin fusion protein was able to inhibit helper T-cell mediated B-cell activation by binding to a novel 39 kD protein receptor on helper T-cell membranes. The present invention provides for a substantially purified CD40CR receptor; for soluble ligands of CD40CR, including anti-gp39 antibodies and fragments thereof, as well as fusion molecules comprising at least a portion of CD40 protein; and for methods of controlling B-cell activation which may be especially useful in the treatment of allergy or autoimmune disease. More specifically, the present invention relates to the use of anti-gp39 antibodies for treating systemic lupus erythematosus (SLE) or drug induced lupus. ... More specifically, the present invention provides a method of treating lupus in a subject in need of such treatment, e.g. a patient with ongoing systemic lupus erythematosus, or drug-induced lupus, even in the advanced stages of the disease process (wherein kidney damage is often observed) by the administration of a therapeutically effective amount of an antigp39 antibody, e.g. the anti-human gp39 antibodies or fragments thereof disclosed in commonly assigned U.S. Ser. No. 08/475,847, filed Jun. 7, 1995, now allowed. ... One advantage of the present invention is that it enables intervention in an aspect of the immune response which is not antigen specific. Many current therapies for allergy include desensitization to particular antigens, and require that each patient be tested in order to identify antigens associated with sensitivity. As a practical matter, exhaustive analysis of a patient's response to each and every potential allergen is virtually impossible. Furthermore, in most autoimmune conditions, the causative antigen is, generally, unknown or even irrelevant to the disease process. The present invention, which relates to the antigen-nonspecific CD40/CD40CR interaction, circumvents the need to characterize the antigen associated with allergy or autoimmunity. Therefore, the present invention may be used to particular advantage in the treatment of allergic or autoimmune conditions in which the immunogen is not known, or has multiple components, for example, in hay fever, procainamide induced lupus or systemic lupus erythematosus (SLE). It should also be useful in acute treatment of immune activation, for example, in therapy for anaphylaxis. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html
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·
Peptides for the treatment of systemic lupus erythematosus and methods of treating systemic lupus erythematosus Inventor(s): Naparstek, Yaakov ; (Jerusalem, IL) Correspondence: Cooper & Dunham LLP; 1185 Avenue of the Americas; New York; NY; 10036; US Patent Application Number: 20020054872 Date filed: April 4, 2001 Abstract: A method is disclosed for treating systemic lupus erythematosus in a mammalian subject, comprising administering to said subject an effective dose of at least one laminin peptide, or an analog or a derivative thereof. In one exemplary embodiment, the laminin peptide is selected from the group consisting of R38 (SEQ. ID. NO. 1), and claimed R38 analogs and derivatives thereof including 5200 (SEQ. ID. NO. 10), 5104 (SEQ. ID. NO. 15), 5105 (SEQ. ID. NO. 16), 5106 (SEQ. ID. NO. 17), 5107 (SEQ. ID. NO. 18), 5108 (SEQ. ID. NO. 19), 5109 (SEQ. ID. NO. 20), 5110 (SEQ. ID. NO. 21). The laminin peptides of the present invention may be prepared by known chemical synthetic methods or by biotechnological methods. The invention also provides assays useful for the diagnosis of and following pathological activity course of systemic lupus erythematosus in patients suffering therefrom. In addition, the subject invention concerns a method of treating systemic lupus erythematosus in a subject comprising the extracorporeal removal of lupus antibodies from the subject's plasma and returning the plasma to the subject. Excerpt(s): This invention relates to the use of laminin peptides and laminin derivatives, including R38 peptide and related analogs for the treatment and detection of systemic lupus erythematosus. This invention also provides methods of treating systemic lupus erythematosus. ... Systemic lupus erythematosus (SLE) is an autoimmune disease involving multiple organs. Through the involvement of the kidneys in the autoimmune inflammatory process, lupus glomerulonephritis is a major cause of morbidity and mortality in this disease (Alarcon-Segovia D. in: Primer on the Rheumatic Diseases. Ed. Schumascher, H. R. Arthritis Foundation, Atlanta, Ga. (1988) pp. 96-100). ... Serologically, the disease is characterized by the occurrence of a variety of autoantibodies in the serum, of which the most prominent are the anti-DNA auto antibodies (Naparstek Y., et al., Ann. Rev. Immunol. (1993), 11, 79-104). Although low titers of anti-DNA antibodies may occur in various inflammatory and autoimmune diseases, high levels are found mainly in SLE, and the combination of high anti-DNA antibodies with low complement levels is
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virtually diagnostic of SLE (Wallace, D. J. et al. in: Dubois' Lupus Erythematosus, Lea and Febiger, Philadelphia, (1993)). Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html ·
Use of growth hormone secretagogues to treat systemic lupus erythematosus and inflammatory bowel disease Inventor(s): Busch, Frank Robert ; (Gales Ferry, CT), Lefker, Bruce A. ; (Gales Ferry, CT), Pan, Lydia C. ; (Mystic, CT) Correspondence: Gregg C. Benson; Pfizer Inc.; Patent Department, MS 4159; Eastern Point Road; Groton; CT; 06340; US Patent Application Number: 20020013320 Date filed: June 14, 2001 Abstract: This invention is directed to methods for treating systemic lupus erythematosus and/or inflammatory bowel disease such as Crohn's disease or ulcerative colitis in a patient which comprise administering a growth hormone secretagogue (GHS), prodrug thereof or a pharmaceutically acceptable salt of said GHS or said prodrug. More particularly, the present invention provides such methods wherein the GHS is a compound of Formula I: 1or a prodrug thereof or a pharmaceutically acceptable salt of said GHS or said prodrug. This invention is also directed to combinations of a GHS and a second therapeutic agent, where said second therapeutic agent is known to be beneficial in the treatment of systemic lupus erythematosus and/or inflammatory bowel disease such as Crohn's disease or ulcerative colitis, to kits and pharmaceutical compositions comprising such a combination and to methods of treating systemic lupus erythematosus and/or inflammatory bowel disease such as Crohn's disease or ulcerative colitis using such combinations, pharmaceutical compositions and kits. Excerpt(s): The present invention provides methods of using growth hormone secretagogues, prodrugs thereof and pharmaceutically acceptable salts of said secretagogues and said prodrugs to treat systemic lupus erythematosus, Crohn's disease, inflammatory bowel disease (IBD) and ulcerative colitis. More specifically, the present invention provides such methods wherein the growth hormone secretagogues are certain compounds of Formula I below. This invention also provides combinations comprising a growth hormone secretagogue and a second therapeutic agent selected from methotrexate, dapsone, a glucocorticoid or an antimalarial. The invention also provides pharmaceutical compositions and kits comprising such combinations and methods of using such combinations, pharmaceutical compositions and kits in the
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treatment of systemic lupus erythematosus, Crohn's disease, IBD and ulcerative colitis. ... The origin of autoantibody production in SLE is unclear but a role has been suggested for an antigen driven process, spontaneous B-cell hyper-responsiveness, or impaired immune regulation. Regardless of the etiology of autoantibody production, SLE is associated with the impaired clearance of circulating immune complexes secondary to decreased CR1 expression, defective Fc receptor function, or deficiencies of early complement components such as C4A. (Belmont, ibid.) It has been suggested that the apoptosis process is atypical in the lupus patient leading to the increased production of autoantibodies including antiphospholipid antibodies. (L. Casciola-Rosen et al., Proc. Natl. Acad. Sci. USA, 93, 1996, 1624-1629. ... The health status of a patient with SLE is related not only to disease activity, but to the damage that results from recurrent episodes of disease flare (e.g., deforming arthropathy, shrinking lung, end stage renal disease, organic mental syndrome, etc.), as well as the adverse effects of treatment (e.g., avascular necrosis of bone, infections, precocious atherosclerosis, etc.). (H. Michael Belmont, Clinical Overview of Lupus, http://cerebel.com/lupus/overview.html.) Current therapy for SLE consists of treatment with antimalarials, methotrexate, dapsone, corticosteroids and/or glucocorticoids. These treatments suffer from the drawback that the disease is not adequately controlled and that each of the current treatments have known serious side effects. For example, long term corticosteroid use can lead to osteoporosis, high blood pressure, arterial damage, increased risk of infection and cataracts. (http:/www.nih.gov/niams/healthinfo/). Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html
Keeping Current In order to stay informed about patents and patent applications dealing with lupus, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the following steps: Under “Patent Grants,” click “Quick Search.” Then, type “lupus” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on lupus. You can also use this procedure to view pending patent applications concerning lupus. Simply go back to the following Web address:
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http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above.
Vocabulary Builder Abortion: 1. the premature expulsion from the uterus of the products of conception - of the embryo, or of a nonviable fetus. The four classic symptoms, usually present in each type of abortion, are uterine contractions, uterine haemorrhage, softening and dilatation of the cervix, and presentation or expulsion of all or part of the products of conception. 2. premature stoppage of a natural or a pathological process. [EU] Adjuvant: A substance which aids another, such as an auxiliary remedy; in immunology, nonspecific stimulator (e.g., BCG vaccine) of the immune response. [EU] Allergen: A antigenic substance capable of producing immediate-type hypersensitivity (allergy). [EU] Anaphylaxis: An acute hypersensitivity reaction due to exposure to a previously encountered antigen. The reaction may include rapidly progressing urticaria, respiratory distress, vascular collapse, systemic shock, and death. [NIH] Antibacterial: A substance that destroys bacteria or suppresses their growth or reproduction. [EU] Arginine: An essential amino acid that is physiologically active in the Lform. [NIH] Arthropathy: Any joint disease. [EU] Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Carcinoma: A malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and give rise to metastases. [EU] Cardiolipins: Acidic phospholipids composed of two molecules of phosphatidic acid covalently linked to a molecule of glycerol. They occur primarily in mitochondrial inner membranes and in bacterial plasma membranes. They are the main antigenic components of the Wassermanntype antigen that is used in nontreponemal syphilis serodiagnosis. [NIH] Chlorpromazine: The prototypical phenothiazine antipsychotic drug. Like the other drugs in this class chlorpromazine's antipsychotic actions are thought to be due to long-term adaptation by the brain to blocking dopamine receptors. Chlorpromazine has several other actions and
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therapeutic uses, including as an antiemetic and in the treatment of intractable hiccup. [NIH] Clarithromycin: A semisynthetic macrolide antibiotic derived from erythromycin that is active against a variety of microorganisms. It can inhibit protein synthesis in bacteria by reversibly binding to the 50S ribosomal subunits. This inhibits the translocation of aminoacyl transfer-RNA and prevents peptide chain elongation. [NIH] Criterion: A standard by which something may be judged. [EU] Curative: Tending to overcome disease and promote recovery. [EU] Desensitization: The prevention or reduction of immediate hypersensitivity reactions by administration of graded doses of allergen; called also hyposensitization and immunotherapy. [EU] Erythrocytes: Red blood cells. Mature erythrocytes are non-nucleated, biconcave disks containing hemoglobin whose function is to transport oxygen. [NIH] Extracorporeal: Situated or occurring outside the body. [EU] Glycine: A non-essential amino acid. It is found primarily in gelatin and silk fibroin and used therapeutically as a nutrient. It is also a fast inhibitory neurotransmitter. [NIH] Haemostasis: The arrest of bleeding, either by the physiological properties of vasoconstriction and coagulation or by surgical means. [EU] Immunogenic: Producing immunity; evoking an immune response. [EU] Immunosuppressant: An agent capable of suppressing immune responses. [EU]
Intravascular: Within a vessel or vessels. [EU] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Laminin: Large, noncollagenous glycoprotein with antigenic properties. It is localized in the basement membrane lamina lucida and functions to bind epithelial cells to the basement membrane. Evidence suggests that the protein plays a role in tumor invasion. [NIH] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Medicament: A medicinal substance or agent. [EU] Membranes: Thin layers of tissue which cover parts of the body, separate adjacent cavities, or connect adjacent structures. [NIH]
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Microscopy: The application of microscope magnification to the study of materials that cannot be properly seen by the unaided eye. [NIH] Microspheres: Small uniformly-sized spherical particles frequently labeled with radioisotopes or various reagents acting as tags or markers. [NIH] Mycoplasma: A genus of gram-negative, facultatively anaerobic bacteria bounded by a plasma membrane only. Its organisms are parasites and pathogens, found on the mucous membranes of humans, animals, and birds. [NIH]
Particle: A tiny mass of material. [EU] Probenecid: The prototypical uricosuric agent. It inhibits the renal excretion of organic anions and reduces tubular reabsorption of urate. Probenecid has also been used to treat patients with renal impairment, and, because it reduces the renal tubular excretion of other drugs, has been used as an adjunct to antibacterial therapy. [NIH] Prodrugs: A compound that, on administration, must undergo chemical conversion by metabolic processes before becoming the pharmacologically active drug for which it is a prodrug. [NIH] Reagent: A substance employed to produce a chemical reaction so as to detect, measure, produce, etc., other substances. [EU] Thromboplastin: Constituent composed of protein and phospholipid that is widely distributed in many tissues. It serves as a cofactor with factor VIIa to activate factor X in the extrinsic pathway of blood coagulation. [NIH]
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CHAPTER 6. BOOKS ON LUPUS Overview This chapter provides bibliographic book references relating to lupus. You have many options to locate books on lupus. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on lupus include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan.
Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “lupus” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on lupus: ·
Successful Living With Lupus: An Action Workbook Source: Hicksville, NY: Balance Enterprises, Inc. 2000. 78 p.
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Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: $10.00 plus shipping and handling; bulk discount available. Summary: This workbook provides people who have lupus with worksheets that help them take a positive, empowering approach to improving their emotional and social well being. A general strategies section focuses on learning about lupus, pinpointing areas to improve, setting goals for self improvement, and using relaxation techniques. A section on the body deals with performing a body inventory, determining strengths, improving nutritional status and sleeping habits, and exercising for improved health. A symptoms section offers worksheets on keeping a symptom or discomfort log, handling medical problems more effectively, monitoring pain numerically, minimizing flares, creating mental images to control pain, dealing with secondary gains, understanding treatment recommendations, learning about medications, handling medication problems or side effects, and preparing for hospitalization. Sections on the psychological aspects of lupus focus on using cognitive restructuring, disrupting irrational thoughts, dealing with negative thoughts, using positive affirmations, using comparisons effectively, joining a support group, keeping a feelings journal, sharing feelings, monitoring stress numerically, identifying depression triggers, using positive self directed statements, changing pessimism into optimism, watching mental movies, using various techniques to control anger and guilt, and identifying anxiety triggers. Another section on psychological management deals with self esteem. Worksheets focus on analyzing self esteem, identifying good qualities, and complimenting oneself. A section on relationships includes worksheets on establishing a support network, reducing stressful family interactions, improving family communication, benefiting from gripe time, setting ground rules, modifying one's expectations, scripting what one wants to say, trying to understand the other person's point of view, expressing oneself in a letter, handling people who give advice, controlling sabotage, keeping track of questions for professionals, improving the patient physician partnership, and selecting a health professional. A final section provides worksheets on identifying life changes since the lupus diagnosis, conserving energy, selecting high energy or low energy activities, analyzing the impact of difficult situations, and improving illness related experiences.
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·
Lupus Book: A Guide for Patients and Their Families, Revised and Expanded Edition Source: New York, NY: Oxford University Press. 2000. 283 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: $21.95 plus shipping and handling; bulk discount available. Summary: This revised and expanded version of a book first published in 1995 provides patients with lupus and their families with reliable, up to date information that will help them manage the disease and live a better life. Part 1 explains how lupus is defined and classified, explores the historical context of the disease, and provides an overview of its epidemiology. Part 2 focuses on how lupus damages body tissue and why it occurs. Topics include the components of the normal inflammatory and immune system and the features unique to lupus and other autoimmune processes that alter this system to cause tissue injury. Part 3 focuses on etiology. Topics include the genetic aspects of lupus; environmental factors that act as inciting agents, such as chemical agents, foods, ultraviolet radiation, and infectious agents; drugs that exacerbate lupus such as antibiotics, nonsteroidal antiinflammatory drugs, and hormones; and drugs that cause drug induced lupus. Part 4 takes the reader through the diagnosis, using an approach that considers symptoms, signs, and conditions affecting the blood, the skin, the musculoskeletal system, the lung, the heart, the nervous system, the head and neck, the gastrointestinal tract, the kidneys, the urinary tract, and the lymphatic system. The differential diagnosis of lupus is also considered. Part 5 focuses on the management of lupus. Topics include the effect of sunlight, diet, exercise, heat, rest, and climatic conditions; the principal psychosocial problems that patients with lupus encounter and ways to deal with them; the use of nonsteroidal antiinflammatory drugs and disease modifying antirheumatic drugs; and the use of other drugs for short periods. Other topics include the management of infections, allergies, and osteoporosis; the impact of lupus on a pregnancy; the prognosis for people who have lupus; and future medical advances. The book includes a glossary and a list of resource materials.
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Challenges of Lupus: Insights and Hope Source: Garden City Park, NY: Avery Publishing Group. 1999. 255 p. Contact: Available from Penguin-Putnam, Inc. Consumer Sales, 405 Murray Hill Parkway, East Rutherford, NJ 07073. (800) 788-6262. Price: $14.95 plus shipping and handling. ISBN 0895298813.
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Summary: This book provides people who have lupus with information that will help them take better care of themselves by better understanding their disease. The book is a compilation of 40 articles written by experts on the subject of lupus. The book is organized into six parts. Part 1, which serves as an introduction to lupus, provides readers with an overview. Topics include the epidemiology, manifestations, diagnosis, etiology, and management of lupus. Part 2 recounts the author's personal experiences and the experiences of others with lupus. Part 3 discusses the way lupus affects different groups of people at different stages of life, including newborns, children, women, men, the elderly, and pregnant women. Part 4 explains the different manifestations of lupus, such its effects on the lungs, the skeletal system, the central nervous system, the heart and blood vessels, the blood, and the skin. Part 5 details the medications that are used in the treatment of lupus, including corticosteroids, nonsteroidal antiinflammatory drugs, antimalarial drugs, and cytotoxic drugs. Other topics include the development of drug induced lupus; the treatment of blood disorders, pain, and psychiatric, neurologic, cardiovascular, renal, cutaneous, and gastrointestinal manifestations; the psychiatric side effects of lupus medications; the use of placebos; and the role of a kidney biopsy. Part 6 examines the importance of the physician patient relationship. The book includes a glossary and a list of local chapters of the Lupus Foundation of America. 41 references. ·
Lupus: Everything You Need to Know Source: Garden City Park, NY: Avery Publishing Group. 1998. 238 p. Contact: Available from Avery Publishing Group. 120 Old Broadway, Garden City Park, NY 11040. (800) 548-5757. Price: $12.95 plus shipping and handling. ISBN 0895298333. Summary: This book for people with lupus and their families uses a question and answer format to provide clear and concise information about this autoimmune disease. Chapter 1 presents an overview of lupus, focusing on the nature of lupus; the features of the three kinds of lupus; the causal factors involved; the progression of the disease; and its triggers. The next chapter answers questions about the diagnosis of lupus, focusing on common tests such as the antinuclear antibody test, the anti-deoxyribonucleic acid test, the anticardiolipin antibody test, and the anti-Smith test. It also identifies important factors in diagnosing lupus, visualization, and other procedures that are helpful in the diagnosis of lupus. The third chapter focuses on the symptoms of lupus, including common symptoms; complications of the joints and muscles, skin, kidneys, nervous system, blood, cardiovascular system, lungs,
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gastrointestinal system, reproductive system, mouth, and eyes; aches and pains; sun sensitivity; infections; and fatigue. Chapter 4 provides answers to questions about the methods of treating lupus, other than medication, focusing on physical therapy, plasmapheresis, alternative medicine, diet, and rest and exercise. The focus of the next chapter is on medications used to treat lupus, including aspirin, nonsteroidal anti-inflammatory drugs, antimalarials, corticosteroids, immunosuppressants, and dehydroepiandrosterone. The final chapter answers questions about the impact of lupus on sexual activity, pregnancy, family life, and work. An appendix lists sources of additional information. ·
Living Well: Despite Lupus! Source: Hicksville, NY: Balance Enterprises, Inc. 1996. 58 p. Contact: Lupus Foundation of America, Inc., Western Pennsylvania Chapter, 1323 Forbes Avenue, Suite 200, Pittsburgh, PA 15219. (412) 2615886. (800) 800-5776. (412) 472-2722 (fax). Summary: This book teaches individuals with lupus 204 effective techniques for helping themselves to feel better. An introductory section provides an overview of lupus. Subsequent sections offer strategies for preparing for one's lupus self-improvement program; working on the way lupus affects one's physical symptoms; understanding the role and benefit of medication; taking care of one's body by eating a healthy, nutritious diet, getting enough exercise, avoiding inappropriate, addictive-type behaviors, and getting enough sleep; using relaxation and imagery techniques; working on the way lupus affects one's day-to-day living, activities, emotions, self-esteem, and relationships; and taking advantage of resources to live well despite lupus.
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Lupus: A Patient Care Guide for Nurses and Other Health Professionals Source: Bethesda, MD: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse. 1998. 146 p. Contact: Available from National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse. 1 AMS Circle, Bethesda, MD 20892-3675. (877) 226-4267 or (301) 495-4484. Fax (301) 718-6366. TTY (301) 565-2966. E-mail:
[email protected]. Website: www.niams.nih.gov. Price: 1 to 25 copies free. Order Number: AR-204. Summary: This guide provides health professionals with an overview of lupus and what is involved in caring for patients who have it. Chapter one focuses on the features of discoid lupus erythematosus, systemic
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lupus erythematosus (SLE), and drug-induced SLE; the symptoms, diagnosis, and treatment of SLE; medications; and psychosocial aspects. The implications of these aspects for the way nurses or other health professionals work with a patient who has lupus are discussed as well. Chapter two highlights some recent research advances in terms of the role of immune system dysfunction, genetics, environmental influences, and hormones in the etiology of Systemic Lupus Erythematosus. It also reviews ongoing research in treatment and health maintenance and discusses the role of the National Institute of Arthritis and Musculoskeletal and Skin Diseases in lupus research. Chapter three describes the major tests used to diagnose and evaluate SLE, including blood tests, autoimmunity measurements, and tests for kidney disease. It also provides information on the rationale for using these tests and their clinical usefulness. Chapter four provides an overview of general and system specific lupus manifestations, as well as potential problems and nursing interventions for each. Among the general manifestations are fatigue, fever, and psychological and emotional effects. Specific manifestations include dermatologic, musculoskeletal, hematologic, cardiopulmonary, renal, central nervous system, gastrointestinal, and ophthalmologic abnormalities. Several key issues, including pregnancy, infection, and nutrition, are also discussed. Chapter five reviews the major categories of medications used to treat lupus, including nonsteroidal anti-inflammatory drugs, antimalarials, corticosteroids, and immunosuppressives. Chapter six examines the psychosocial aspects of lupus, including helping a patient cope with the emotional needs associated with seeking a diagnosis; handling the reactions of family members and oneself; and gaining control over feelings, emotions, and new physical limitations. Chapter seven presents 16 short fact sheets covering a broad range of issues related to living with lupus and using medications to manage it. The final chapter identifies organizations and written materials that may be useful as sources of further information about lupus and patient care. The guidebook concludes with an index. 54 references. ·
Lupus Eritematoso: Manual para medicos, pacientes y familiares, 2a. Edicion Source: Washington, DC: La Fundacion Americana para el Lupus. 1998. 66 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: $3.00 plus shipping and handling.
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Summary: This illustrated handbook, written in Spanish, provides health professionals and patients who have lupus and their families with information on this chronic immune system disease. The handbook begins by describing the types of lupus, including discoid lupus and systemic lupus erythematosus. This is followed by information on incidence and prevalence and some common symptoms. Other topics include the cause of lupus, diagnosis based on clinical evidence, the role of heredity, pregnancy and lupus, exacerbation and remission, treatment options, and prognosis. In addition, the handbook discusses the importance of a balanced diet, treatments under investigation, and the activities of the American Foundation for Lupus and the National Institutes of Health. The handbook concludes with a list of recommended readings. ·
Lupus Handbook for Women: Up-to-date Information on understanding and Managing the Disease which Affects 1 in 500 Women Source: New York, NY: Fireside. 1994. 176 p. Contact: Available from Fireside, Rockefeller Center, 1230 Avenue of the Americas, New York, NY 10020. Price: $10.00 in the U.S., $13.00 in Canada. Summary: This handbook for women with lupus helps educate them about their illness. Chapters discuss the causes and symptoms of lupus, describe the 11 criteria for diagnosing systemic lupus erythematosus (SLE), examine the role of the physical examination and laboratory tests in the diagnosis of SLE, identify common complications of SLE and discuss their diagnosis and treatment, describe drug and experimental therapies for treating SLE, and offer guidelines for managing and preserving one's health. Chapters also provide suggestions for maintaining a healthy lifestyle, examine the impact of lupus on intimate relationships, identify the factors that women with lupus should consider before becoming pregnant and address issues that they should consider during pregnancy, and offer advice for coping with lupus. A list of resources is also provided. 16 references.
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Primer on Kidney Diseases. 2nd ed Source: San Diego, CA: Academic Press. 1998. 542 p. Contact: Available from Academic Press. Order Fulfillment Department, 6277 Sea Harbor Drive, Orlando, FL 32887. (800) 321-5068 or (407) 3453800. Fax (800) 874-6418 or (407) 345-4060. E-mail:
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[email protected]. Website: www.apnet.com. Price: $57.95 plus shipping and handling. ISBN: 0122990900. Summary: This comprehensive textbook on kidney diseases is designed for medical students, house staff, and practitioners. The text offers a summary of the management of renal disease and fluid and electrolyte disorders. The 79 chapters are categorized in 11 sections, covering renal function and its assessment, electrolyte disorders, glomerular disease, the kidney in systemic disease, acute renal failure, drugs and the kidney, hereditary renal diseases, tubulointerstitial diseases, the kidney in special circumstances, chronic renal disease, and hypertension. Specific chapter topics include the characteristics of kidney function in the very young and in the very old, tubulointerstitial diseases, analgesic abuse nephropathy and the effects of NSAIDs on the kidneys, hematuria (blood in the urine), proteinuria, renal imaging techniques, metabolic acidosis and alkalosis, edema and the clinical use of diuretics, immunopathogenesis, minimal change nephropathy, IgA nephropathy, Goodpasture's syndrome, renal function in congestive heart failure, renal function in liver disease, renal manifestations of systemic lupus erythematosus, diabetic nephropathy, dysproteinemias and amyloidosis, renal and urologic complications of cancer and its treatment, hemolytic uremic syndrome, the renal manifestations of HIV, interstitial nephritis, sickle cell nephropathy, Alport's syndrome, medullary cystic disease, tubulointerstitial disease, lead nephrotoxicity, lithium induced renal disease, medullary sponge kidney, obstructive uropathy, nephrolithiasis (kidney stones), urinary tract infections, the kidney in pregnancy, the uremic syndrome, hemodialysis and hemofiltration, peritoneal dialysis, nutrition and renal disease, renal osteodystrophy, renal transplantation, and the pathogenesis of hypertension. Each chapter is written by an established expert in the field. The book is illustrated with full color and black and white photographs, figures, and tables. Each chapter concludes with suggested readings. An extensive subject index concludes the text. ·
Kidney in Collagen-Vascular Diseases Source: New York, NY: Raven Press, Ltd. 1993. 258 p. Contact: Available from Raven Press. 1185 Avenue of the Americas, Dept. 5B, New York, NY 10036. (800) 777-2836 or (212) 930-9500. Fax (212) 8693495. Price: $107.50 plus $4.95 shipping and handling (as of 1995). ISBN: 0781700213. Summary: This book brings together current thinking about the effects of various collagen-vascular diseases on the kidney and the diagnostic and therapeutic procedures currently available. These diseases comprise a heterogeneous group of acute and chronic inflammatory, degenerative,
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and sclerosing processes in the connective tissues and the walls of blood vessels. Eleven chapters cover experimental animal models of systemic lupus erythematosus (SLE); immunology and pathogenesis; lupus-like syndrome; SLE in humans; scleroderma (systemic sclerosis); rheumatoid arthritis and ankylosing spondylitis; mixed connective tissue disease; Sjogren's syndrome; systemic vasculitis; and other collagen diseases, including relapsing polychondritis, acute rheumatic fever, and polymyositis/dermatomyositis. Each chapter includes numerous references and a subject index concludes the volume. ·
Coping with Lupus Source: Garden City Park, NY: Avery Publishing Group. 1991. 276 p. Contact: Available from Avery Publishing Group. 120 Old Broadway, Garden City Park, NY 11040. (800) 548-5757 or (516) 741-2155. Fax (516) 742-1892. E-mail:
[email protected]. Website: www.averypublishing.com. Price: $12.95 plus shipping and handling. ISBN: 0895294753. Summary: This book offers lupus patients a guide to adapting to life with systemic lupus erythematosus (SLE). The first part of the book presents background information on lupus: what it is, how it is diagnosed, and treatment options. The other main parts deal with different aspects of living with lupus, including coping with emotions, changes in lifestyle, and living with others. Specific chapters are offered on the child and adolescent with lupus. The author stresses that, just as the symptoms of lupus are different in each person, the psychological effects of having lupus also vary with each person who is diagnosed with the illness. Suggestions for strategies and techniques to try are offered in the areas of physical changes, rest and exercise, weight changes and diet, activities, pain, financial problems, traveling, quackery, sexuality, dealing with family members, pregnancy, emotions, dealing with friends and colleagues, and stress management. Throughout the book, the author offers vignettes of lupus patients who have struggled with different issues and explains how they coped with their own situations. The book concludes with an appendix listing a few resources and a subject index.
Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s publisher. Some summaries also include customer reviews. Your local
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bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to lupus (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): ·
Systematic Lupus Erythematosus: Clinical and Theoretical Aspects by J.L. Verbov, et al (1973); ISBN: 084227104X; http://www.amazon.com/exec/obidos/ASIN/084227104X/icongroupi nterna
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Understanding Lupus/What It Is, How to Treat It and How to Cope With It by Henrietta Aladjem (1986); ISBN: 068418348X; http://www.amazon.com/exec/obidos/ASIN/068418348X/icongroupi nterna
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Lupus: My Search for a Diagnosis by Eileen Radziunas, Jackie Melvin (Editor) (1990); ISBN: 0897930657; http://www.amazon.com/exec/obidos/ASIN/0897930657/icongroupin terna
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Heartsearch: Toward Healing Lupus by Donna Hamil Talman, William A. Briggs (Photographer) (1991); ISBN: 1556430728; http://www.amazon.com/exec/obidos/ASIN/1556430728/icongroupin terna
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Coping With Lupus: A Guide to Living With Lupus for You and Your Family by Robert H. Phillips (1991); ISBN: 0895294753; http://www.amazon.com/exec/obidos/ASIN/0895294753/icongroupin terna
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Heartsearch (1991); ISBN: 155643104X; http://www.amazon.com/exec/obidos/ASIN/155643104X/icongroupi nterna
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Ms. Lupus and Me: And That's Not All by Bess Kossoudji Harvey (1992); ISBN: 0964063506; http://www.amazon.com/exec/obidos/ASIN/0964063506/icongroupin terna
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Systemic Lupus Erythematosus by Robert G. Lahita (1992); ISBN: 0471873888; http://www.amazon.com/exec/obidos/ASIN/0471873888/icongroupin terna
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Living With Lupus: All the Knowledge You Need to Help Yourself by Sheldon Paul Blau, Dodi Schultz (Contributor) (1993); ISBN: 020160809X; http://www.amazon.com/exec/obidos/ASIN/020160809X/icongroupi nterna
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Living With Lupus: A Comprehensive Guide to Understanding and Controlling Lupus While Getting on With Your Life by Mary Horowitz, et al (1994); ISBN: 0452270561; http://www.amazon.com/exec/obidos/ASIN/0452270561/icongroupin terna
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Embracing the Wolf: A Lupus Victim and Her Family Learn to Live With Chronic Disease by Robert H. Gifford (Designer), et al (1994); ISBN: 0877971668; http://www.amazon.com/exec/obidos/ASIN/0877971668/icongroupin terna
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The Lupus Handbook for Women: Up-To-Date Information on Understanding and Managing the Disease Which Affects 1 in 500 Women by Robin, M.D. Dibner, Carol Colman (Contributor) (1994); ISBN: 0671790315; http://www.amazon.com/exec/obidos/ASIN/0671790315/icongroupin terna
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Pumpkin: A Young Woman's Struggle With Lupus by Patricia M. Fagan, Adolfo Caso (Editor) (1994); ISBN: 0828319618; http://www.amazon.com/exec/obidos/ASIN/0828319618/icongroupin terna
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My Adventure With Lupus: Living With a Chronic Illness by Robert L. Yocum (1995); ISBN: 1888824026; http://www.amazon.com/exec/obidos/ASIN/1888824026/icongroupin terna
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Lupus: Living With It by Suzy Living With It Szasz (1995); ISBN: 1573920231; http://www.amazon.com/exec/obidos/ASIN/1573920231/icongroupin terna
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Systemic Lupus Erythematosus by Peter A. Miescher (Editor) (1995); ISBN: 0387590390; http://www.amazon.com/exec/obidos/ASIN/0387590390/icongroupin terna
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The Clinical Management of Systemic Lupus Erythematosus by Peter H. Schur (Editor) (1996); ISBN: 0397514735; http://www.amazon.com/exec/obidos/ASIN/0397514735/icongroupin terna
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Coping With Lupus by Robert H. Phillips (1997); ISBN: 0895292521; http://www.amazon.com/exec/obidos/ASIN/0895292521/icongroupin terna
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Neuropsychiatric Manifestations of Systemic Lupus Erythematosus (Annals of the New York Academy of Sciences, V. 823) by P. M. Moore (Editor), Robert G. Lahita (Editor) (1997); ISBN: 1573310816; http://www.amazon.com/exec/obidos/ASIN/1573310816/icongroupin terna
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Recent Advances in Systemic Lupus Erythematosus by L. Perrin (Editor), et al (1997); ISBN: 0124346200; http://www.amazon.com/exec/obidos/ASIN/0124346200/icongroupin terna
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Learning About Lupus: A User Friendly Guide by Mary E. Moore (Editor), et al (1997); ISBN: 0965953009; http://www.amazon.com/exec/obidos/ASIN/0965953009/icongroupin terna
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Lupus Viator Atlanta by Darya Von Berner (Illustrator) (1998); ISBN: 0932526586; http://www.amazon.com/exec/obidos/ASIN/0932526586/icongroupin terna
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The Challenges of Lupus: Insights & Hope by Henrietta Aladjem, Henrietta Aladiem (1999); ISBN: 0895298813; http://www.amazon.com/exec/obidos/ASIN/0895298813/icongroupin terna
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Lupus: Alternative Therapies That Work by Sharon Moore (2000); ISBN: 0892818891; http://www.amazon.com/exec/obidos/ASIN/0892818891/icongroupin terna
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ABC of Asthma, Allergies and Lupus: Eradicate Asthma - Now! by Fereydoon Batmanghelidj (2000); ISBN: 096299426X; http://www.amazon.com/exec/obidos/ASIN/096299426X/icongroupi nterna
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Coping With Lupus: A Practical Guide to Alleviating the Challenges of Systemic Lupus Erythematosus by Robert H., Ph.D. Phillips, et al (2001); ISBN: 158333095X; http://www.amazon.com/exec/obidos/ASIN/158333095X/icongroupi nterna
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The Great Canis Lupus by James McEachin (2001); ISBN: 0965666166; http://www.amazon.com/exec/obidos/ASIN/0965666166/icongroupin terna
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The Lupus Kid and Other Stories by Robert Wendell (2002); ISBN: 0595224164;
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http://www.amazon.com/exec/obidos/ASIN/0595224164/icongroupin terna ·
New Hope for People with Lupus: Your Friendly, Authoritive Guide to the Latest in Traditional and Complementary Solutions by Theresa Foy Digeronimo, et al (2002); ISBN: 076152097X; http://www.amazon.com/exec/obidos/ASIN/076152097X/icongroupi nterna
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Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life by Maureen Pratt, et al (2002); ISBN: 0451206991; http://www.amazon.com/exec/obidos/ASIN/0451206991/icongroupin terna
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What Your Doctor May Not Tell You About Autoimmune Disorders: The Revolutionary, Drug-Free Treatments for Thyroid Disease, Lupus, MS, IBD, Chronic Fatigue; Rheumatoid Arthritis, and Other Diseases by Stephen B. Edelson, Deborah Mitchell (2003); ISBN: 0446679240; http://www.amazon.com/exec/obidos/ASIN/0446679240/icongroupin terna
The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “lupus” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:26 ·
Clinical management of systemic lupus erythematosus. Author: editor, by Peter H. Schur; with twenty-nine contributors; Year: 1996; Philadelphia: Lippincott-Raven, c1996; ISBN: 0397514735
In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books.
26
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http://www.amazon.com/exec/obidos/ASIN/0397514735/icongroupin terna ·
Conference report: education strategies for improving the outcome of lupus in high risk populations, October 24, 1985, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, Maryland. Author: sponsored by the National Institute of Arthriti; Year: 1985; [Rockville, Md.?: s.n., 1985]
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Dubois' lupus erythematosus. Author: editors, Daniel J. Wallace, Bevra Hannahs Hahn; associate editors, Francisco P. Quismorio, Jr., James R. Klinenberg; Year: 1997; Baltimore: Williams & Wilkins, c1997; ISBN: 0683086650 http://www.amazon.com/exec/obidos/ASIN/0683086650/icongroupin terna
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Evaluation of lupus anticoagulant kits. Author: I. J. Mackie ... [et al.]; Year: 1998; London: Department of Health, 1998; ISBN: 1858399181
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Heartsearch: toward healing lupus. Author: by Donna Hamil Talman; Year: 1991; Berkeley, Calif.: North Atlantic Books, c1991; ISBN: 1556430728 (pbk.) http://www.amazon.com/exec/obidos/ASIN/1556430728/icongroupin terna
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Intravenous immunoglobulin for the treatment of systemic lupus erythematosus. Author: ECRI; Year: 2002; Plymouth Meeting, PA: ECRI, c2002
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Living with it: why you don't have to be healty to be happy. Author: Suzy Szasz; Year: 1991; Buffalo: Prometheus Books, c1991; ISBN: 0879756594 http://www.amazon.com/exec/obidos/ASIN/0879756594/icongroupin terna
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Lupus: a patient care guide for nurses and other health professionals. Author: National Institutes of Health, National Institutes of Arthritis and Musculoskeletal and Skin Diseases; Year: 1998; Bethesda, Md.: The Institute, [1998]
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Lupus: molecular and cellular pathogenesis. Author: edited by Gary M. Kammer and George C. Tsokos; foreword by Noel R. Rose; Year: 1999; Totowa, N.J.: Humana Press, c1999; ISBN: 0896035565 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0896035565/icongroupin terna
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Lupus: professional education materials: an annotated bibliography. Author: National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse; Year: 1990; Bethesda, Md. (Box AMS, 9000 Rockville Pike, Bethesda 20892): U.S. Dept. of Health and Human
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Services, Public Health Service, National Institutes of Health, National Institute of Arthritis and Musculoskeletal and Skin Diseases, 1990 ·
Lupus book: a guide for patients and their families. Author: Daniel J. Wallace; Year: 2000; New York: Oxford University Press, 2000; ISBN: 0195132815 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/0195132815/icongroupin terna
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Lupus nephritis. Author: edited by Edmund J. Lewis, Melvin M. Schwartz, and Stephen M. Korbet; Year: 1999; Oxford; New York: Oxford University Press, c1999; ISBN: 0192627554 http://www.amazon.com/exec/obidos/ASIN/0192627554/icongroupin terna
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Neuropsychiatric manifestations of systemic lupus erythematosus. Author: edited by Patricia M. Moore and Robert G. Lahita; Year: 1997; New York, N.Y.: New York Academy of Sciences, 1997; ISBN: 1573310808 (cloth: alk. paper) http://www.amazon.com/exec/obidos/ASIN/1573310808/icongroupin terna
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Pathology of systemic lupus erythematosus. Author: Tatiana T. Antonovych, editor; Year: 1995; Washington, DC: Armed Forces Institute of Pathology, American Registry of Pathology, 1995; ISBN: 1881041239 http://www.amazon.com/exec/obidos/ASIN/1881041239/icongroupin terna
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Systemic lupus erythematosus: renal vasculitis. Author: 2nd Seminar on Renal Involvement in Systemic Vasculitis, Vimercate, September 21, 1991; volume editors, A. Sessa, M. Meroni, G. Battini; Year: 1992; Basel; New York: Karger, 1992; ISBN: 3805556039 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3805556039/icongroupin terna
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Systemic lupus erythematosus. Author: Peter A. Miescher (ed.); Year: 1995; Berlin; New York: Springer, c1995; ISBN: 3540590390 (alk. paper) http://www.amazon.com/exec/obidos/ASIN/3540590390/icongroupin terna
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What Black women should know about lupus: ideas for community programs. Author: produced by the Task Force on Lupus in High Risk Populations, National Institute of Arthritis and Musculoskeletal and Skin Diseases; Year: 1994; Bethesda, Md.: The Institute, [1994]
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Chapters on Lupus Frequently, lupus will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with lupus, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and lupus using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “lupus” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on lupus: ·
Systemic Lupus Erythematosus Adult Onset Source: in Maddison, P.J.; et al., Eds. Oxford Textbook of Rheumatology. Volume 2. New York, NY: Oxford University Press, Inc. 1993. p. 733-755. Contact: Available from Oxford University Press, Inc., New York, NY. Summary: This chapter for health professionals presents an overview of systemic lupus erythematosus (SLE) in adults. Data on the epidemiology and natural history of SLE are provided. The clinical features of SLE are described, focusing on nonspecific features and musculoskeletal, dermatological, cardiovascular, pulmonary, renal, neurological, and hematological manifestations. Diseases complicating lupus are identified. Data on lupus during pregnancy, in males, and in the elderly are presented. The immunopathology of lupus is examined both in lupusprone mouse strains and humans. This examination focuses on the specificity of autoantibodies in SLE, cellular abnormalities and cytokine dysregulation, and genetic factors with a role in susceptibility to SLE. General measures for treating lupus are outlined. Drug and other therapies used to treat SLE are described. 69 references, 8 figures, and 12 tables.
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Systemic Lupus Erythematosus in Childhood and Adolescence Source: in Maddison, P.J.; et al., Eds. Oxford Textbook of Rheumatology. Volume 2. New York, NY: Oxford University Press, Inc. 1993. p. 756-771. Contact: Available from Oxford University Press, Inc., New York, NY. Summary: This chapter for health professionals presents an overview of systemic lupus erythematosus (SLE) in children and adolescents. Data on the incidence of SLE in the young are provided. The features of
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musculoskeletal, mucocutaneous, neurologic, renal, hematological, cardiac, pulmonary, gastrointestinal, hepatic, and endocrine manifestations in SLE are described. Methods of evaluating and treating some of these manifestations are highlighted. Antibodies present in children and adolescents with SLE are identified, including antinuclear antibodies and rheumatoid factor. In addition, the clinical features and treatment of neonatal lupus erythematosus are discussed. 68 references, 9 figures, and 9 tables. ·
Impact of Lupus upon the GI Tract and Liver Source: in Wallace, D.J. The Lupus Book: A Guide for Patients and Their Families. New York, NY: Oxford University Press. 1995. p. 128-138. Contact: Available from Lupus Foundation of America. 1300 Picard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Price: $21.95 plus shipping. ISBN: 0195084438. Also available from Oxford University Press. Order Department, 2001 Evans Road, Cary, NC 27513. (800) 451-7556. Fax (919) 677-1303. Price: $25.00. Summary: This chapter on the impact of lupus on the gastrointestinal (GI) tract and the liver is from a guide for lupus patients and their families. The author first describes the basic anatomy and physiology of the GI tract, including the oral cavity, esophagus, stomach, intestines, and related organs including the liver, pancreas, and biliary tree (bile ducts and gallbladder). The author describes the impact of lupus through the use of brief case examples. Topics include reflux esophagitis, hiatal hernia, diagnostic tests, changes in bowel habits (diarrhea and or constipation), problems with nausea and vomiting, drug effects (notably from NSAIDs), peptic ulcer disease, the association of inflammatory bowel disease (IBD) and systemic lupus erythematosus (SLE), the problem of ascites (a collection of fluid in the abdominal cavity), malabsorption, and less common complications such as mesenteric vasculitis, infarction, and bowel hemorrhage. A separate section considers SLE-related liver diseases, including autoimmune (lupoid) hepatitis, enlargement of the liver, jaundice, hepatic vasculitis, BuddChiari syndrome, and ascites. The author concludes that difficulty in swallowing must be attended to immediately. Heartburn and acid indigestion can be brought on by medication, stress, or active lupus. Nonspecific bowel symptoms are common and can be managed symptomatically unless a fever, localized tenderness, swollen abdomen, or bloody stools are present. The liver can be involved in lupus because of reactions to medication, antiphospholipid antibiotics, or as a complication of infection. 1 figure.
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Lupus Source: in Carlson, K.J.; Eisenstat, S.A.; Ziporyn, T. Harvard Guide to Women's Health. Cambridge, MA: Harvard University Press. 1996. p. 361-363. Contact: Available from Harvard University Press. Customer Service Department, 79 Garden Street, Cambridge, MA 02138. (800) 448-2242. Fax (800) 962-4983. Price: $24.95 (paperback). ISBN: 0674367693 (paperback). Summary: This chapter on lupus (systemic lupus erythematosus or SLE) is from a consumer handbook on women's health. Topics include the risk factors, symptoms, diagnostic tests, and treatment options, notably drug therapy and exercise. The chapter concludes with a list of other chapters in the book that may be related. The authors emphasize the emotional and social issues that may impact women's health. They also discuss how common diseases and their treatments are different for women than for men.
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Lupus Erythematosus Source: in Bork, K., et al. Diseases of the Oral Mucosa and the Lips. Orlando, FL: W.B. Saunders Company. 1993. p. 212-216. Contact: Available from W.B. Saunders Company. Order Fulfillment, 6277 Sea Harbor Drive, Orlando, FL 32887-4430. (800) 545-2522 (individuals) or (800) 782-4479 (schools); Fax (800) 874-6418 or (407) 3523445; http://www.wbsaunders.com. Price: $99.00 plus shipping and handling. ISBN: 0721640397. Summary: This chapter, from a textbook on diseases of the oral mucosa and the lips, discusses lupus erythematosus, a chronic autoimmune disease. Lupus erythematosus (LE) is classically divided into three subcategories: systemic lupus erythematosus (SLE) with multiorgan systemic disease; subacute cutaneous lupus erythematosus (SCLE), which primarily involves the skin; and discoid lupus erythematosus (DLE), in which disease is limited to the skin and mucous membranes. For each type, the authors describe the clinical features, oral features, and diagnosis, and present brief therapeutic recommendations. Full-color photographs illustrate the chapter; references are provided. 9 figures. 13 references. (AA-M).
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Lupus in the Kidney and Urinary Tract Source: in Wallace, D.J. The Lupus Book: A Guide for Patients and Their Families. New York, NY: Oxford University Press. 1995. p. 139-145.
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Contact: Available from Lupus Foundation of America. 1300 Picard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Price: $21.95 plus shipping. ISBN: 0195084438. Also available from Oxford University Press. Order Department, 2001 Evans Road, Cary, NC 27513. (800) 451-7556. Fax (919) 677-1303. Summary: This chapter on lupus in the kidney and urinary tract is from a handbook for patients and their families. After discussing the functional anatomy of the kidney, the author reviews the signs and symptoms of lupus nephritis. The author also presents a simple classification of kidney disease and an overview of therapeutic options. Lupus primarily affects the kidney glomerulus and produces a condition known as glomerulonephritis. Renal biopsy is performed to confirm a diagnosis of lupus nephritis and distinguish it from other diseases; to determine if the kidney tissue is inflamed, scarred, or both; and to evaluate treatment. In addition to glomerulonephritis, some kidney problems are caused by the drugs used to treat lupus, notably nonsteroidal anti-inflammatory drugs (NSAIDs). High blood pressure should be managed aggressively, since it accelerates functional kidney impairment. Patients with renal disease should restrict their salt intake to no more than 3 grams a day; when renal function is 50 percent or less, normal protein intake should also be restricted. On the urinary tract side, the ureter is not involved in lupus, and the bladder is a rare target of the disease. But a condition known as lupus cystitis is observed in 1 to 5 percent of those with lupus. Young women are especially prone to developing urinary tract infections, and young women with lupus are particularly vulnerable to infections in general. The author cautions against the use of sulfa antibiotics in patients with lupus. (AA-M). ·
Course and Treatment of Lupus Nephritis Source: in Coggins, C.H.; Hancock, E.W., Eds. Annual Review of Medicine: Selected Topics in the Clinical Sciences, Volume 45. Palo Alto, CA: Annual Reviews Inc. 1994. p. 525-537. Contact: Available from Annual Reviews Inc. 4139 El Camino Way, P.O. Box 10139, Palo Alto, CA 94303-0139. (800) 523-8635. Fax: (415) 855-9815. Price: $47. ISBN: 0824305450. Summary: This chapter, from an 'Annual Review of Medicine,' discusses the course and treatment of lupus nephritis. The authors note that renal involvement by systemic lupus is variable; some patients have minimal clinical and histologic involvement, whereas others have fulminant renal failure and severe proliferative renal lesions. The chapter focuses on the World Health Organization (WHO) classification system which defines six major patterns of renal involvement, each with characteristic clinical
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correlates and a typical course and prognosis. The WHO classification is advantageous because it uses light microscopy, immunofluorescence, and electron microscopy to classify glomerular involvement in systemic lupus erythematosus. The chapter discusses each of the six levels of the classification system and includes reproductions of light microscopy photographs for five of the six levels. 5 figures. 38 references. (AA-M). ·
Systemic Lupus Erythematosus Source: in Suki, W.N.; Massry, S.G., eds. Therapy of Renal Diseases and Related Disorders, 2nd ed. Hingham, MA: Kluwer Academic Publishers. 1991. p. 395-411. Contact: Available from Kluwer Academic Publishers. P.O. Box 358, Accord Station, Hingham, MA 02018. (617) 871-6600. Price: $315. ISBN: 0792306767. Summary: This chapter, from a medical text on the therapy of renal disease and related disorders, discusses systemic lupus erythematosus (SLE), focusing on the renal involvement of the disease. Topics covered include nephritis-related complications, including proteinuria, hypertension, infection, and fetal and maternal morbidity and mortality; therapy, including that for lupus glomerulonephritis; current recommendations for therapy of lupus nephritis; and monitoring therapeutic effects. 9 tables. 233 references.
Directories In addition to the references and resources discussed earlier in this chapter, a number of directories relating to lupus have been published that consolidate information across various sources. These too might be useful in gaining access to additional guidance on lupus. The Combined Health Information Database lists the following, which you may wish to consult in your local medical library:27
You will need to limit your search to “Directories” and lupus using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find directories, use the drop boxes at the bottom of the search page where “You may refine your search by”. For publication date, select “All Years”, select language and the format option “Directory”. By making these selections and typing in “lupus” (or synonyms) into the “For these words:” box, you will only receive results on directories dealing with lupus. You should check back periodically with this database as it is updated every three months.
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9Health Fair Referral Guide Source: Denver, CO, Nine Health Services, Inc., 216 p., 1994. Contact: Nine Health Services, Inc., 825 East Speer Boulevard, Suite 200, Denver, CO 80218. (303) 698-4455. Summary: 9Health Fair Referral Guide is a publication of Nine Health Services, Inc. in Denver, Colorado, and is primarily used as a resource guide by health professionals at 9Health Fairs across Colorado. The Guide was compiled as a general reference with an emphasis on agencies that serve individuals and families on a limited income. It does, however, have resources for all income levels. Each resource listed in the Referral Guide includes an address, phone number, available services and resources, and cost. Resources are listed in each of the following categories: Crisis and emergency numbers, acquired immune deficiency syndrome (AIDS), alopecia areata, Alzheimer's disease, arthritis, blood pressure screenings, cancer, cardiovascular, cerebral palsy, chiropractic, clinics, cystic fibrosis, dental care, dermatology, diabetes, disabled resources, eating disorders, epilepsy, general consumer information and education, government agencies, hearing, home health care, hospitals in metro Denver, immunizations, intestinal diseases, kidney disease, leukemia, living wills and related issues, lupus, medical societies, mental health, migrant health program, multiple sclerosis, muscular dystrophy, nutrition, orthodontics, ostomies, Parkinson's disease, physical therapy, podiatry, post-polio, prostate and testicular cancer, rehabilitation centers, respiratory diseases, runaways and shelters, safety, senior services, sexuality and family planning, sexually transmitted diseases, sickle cell anemia, shelter, smoking withdrawal and smokeless tobacco, social services agencies, speech and language, sports medicine, stress and grief, substance abuse (including alcohol and drug), suicide prevention, transplant resources, transportation, victim assistance, vision, and weight control. Resources are also listed for the following Colorado regions: Central and Mountain area, Eastern, Northern, Southern, and Western. Information numbers and referral services are also listed.
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General Home References In addition to references for lupus, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · All About Joints by Irwin M. Siegel; Paperback - 224 pages 1st edition (December 15, 2001), Demos Medical Publishing; ISBN: 1888799560; http://www.amazon.com/exec/obidos/ASIN/1888799560/icongroupinterna · Arthritis Sourcebook : Basic Consumer Health Information About Specific Forms of Arthrits and Related Disorders by Allan R. Cook (Editor); Hardcover - 600 pages 1 edition (October 1998), Omnigraphics, Inc.; ISBN: 0780802012; http://www.amazon.com/exec/obidos/ASIN/0780802012/icongroupinterna · Primer on the Rheumatic Diseases by John H. Klippel, et al; Paperback 700 pages, 12th edition (December 2001), National Book Network; ISBN: 0912423293; http://www.amazon.com/exec/obidos/ASIN/0912423293/icongroupinterna
Vocabulary Builder Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Alkalosis: A pathologic condition resulting from accumulation of base, or from loss of acid without comparable loss of base in the body fluids, and characterized by decrease in hydrogen ion concentration (increase in pH). [EU]
Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting
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from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Arteriography: Roentgenography of arteries after injection of radiopacque material into the blood stream. [EU] Ascites: Effusion and accumulation of serous fluid in the abdominal cavity; called also abdominal or peritoneal dropsy, hydroperitonia, and hydrops abdominis. [EU] Bile: An emulsifying agent produced in the liver and secreted into the duodenum. Its composition includes bile acids and salts, cholesterol, and electrolytes. It aids digestion of fats in the duodenum. [NIH] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU] Cardiopulmonary: Pertaining to the heart and lungs. [EU] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Cystitis: Inflammation of the urinary bladder. [EU] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Electrolyte: A substance that dissociates into ions when fused or in solution, and thus becomes capable of conducting electricity; an ionic solute. [EU] Esophagitis: Inflammation, acute or chronic, of the esophagus caused by bacteria, chemicals, or trauma. [NIH] Gynecology: A medical-surgical specialty concerned with the physiology and disorders primarily of the female genital tract, as well as female endocrinology and reproductive physiology. [NIH] Hematuria: Presence of blood in the urine. [NIH] Hemofiltration: Extracorporeal ultrafiltration technique without hemodialysis for treatment of fluid overload and electrolyte disturbances affecting renal, cardiac, or pulmonary function. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hepatic: Pertaining to the liver. [EU] Hernia: (he protrusion of a loop or knuckle of an organ or tissue through an abnormal opening. [EU] Homicide: The killing of one person by another. [NIH] Incontinence: Inability to control excretory functions, as defecation (faecal i.) or urination (urinary i.). [EU] Intestines: The section of the alimentary canal from the stomach to the anus.
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It includes the large intestine and small intestine. [NIH] Jaundice: A clinical manifestation of hyperbilirubinemia, consisting of deposition of bile pigments in the skin, resulting in a yellowish staining of the skin and mucous membranes. [NIH] Lithium: Lithium. An element in the alkali metals family. It has the atomic symbol Li, atomic number 3, and atomic weight 6.94. Salts of lithium are used in treating manic-depressive disorders. [NIH] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malaise: A vague feeling of bodily discomfort. [EU] Medullary: Pertaining to the marrow or to any medulla; resembling marrow. [EU] Mesenteric: Pertaining to the mesentery : a membranous fold attaching various organs to the body wall. [EU] Mucocutaneous: Pertaining to or affecting the mucous membrane and the skin. [EU] Mucosa: A mucous membrane, or tunica mucosa. [EU] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Ophthalmologic: Pertaining to ophthalmology (= the branch of medicine dealing with the eye). [EU] Osteodystrophy: Defective bone formation. [EU] Otolaryngology: A surgical specialty concerned with the study and treatment of disorders of the ear, nose, and throat. [NIH] Pancreas: A mixed exocrine and endocrine gland situated transversely across the posterior abdominal wall in the epigastric and hypochondriac regions. The endocrine portion is comprised of the islets of langerhans, while the exocrine portion is a compound acinar gland that secretes digestive enzymes. [NIH] Peptic: Pertaining to pepsin or to digestion; related to the action of gastric juices. [EU] Placebos: Any dummy medication or treatment. Although placebos originally were medicinal preparations having no specific pharmacological activity against a targeted condition, the concept has been extended to include treatments or procedures, especially those administered to control groups in clinical trials in order to provide baseline measurements for the experimental protocol. [NIH] Podiatry: A specialty concerned with the diagnosis and treatment of foot disorders and injuries and anatomic defects of the foot. [NIH]
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Preeclampsia: A toxaemia of late pregnancy characterized by hypertension, edema, and proteinuria, when convulsions and coma are associated, it is called eclampsia. [EU] Prostate: A gland in males that surrounds the neck of the bladder and the urethra. It secretes a substance that liquifies coagulated semen. It is situated in the pelvic cavity behind the lower part of the pubic symphysis, above the deep layer of the triangular ligament, and rests upon the rectum. [NIH] Proximal: Nearest; closer to any point of reference; opposed to distal. [EU] Quackery: The fraudulent misrepresentation of the diagnosis and treatment of disease. [NIH] Reflux: A backward or return flow. [EU] Testicular: Pertaining to a testis. [EU] Ultrasonography: The visualization of deep structures of the body by recording the reflections of echoes of pulses of ultrasonic waves directed into the tissues. Use of ultrasound for imaging or diagnostic purposes employs frequencies ranging from 1.6 to 10 megahertz. [NIH] Ureter: One of a pair of thick-walled tubes that transports urine from the kidney pelvis to the bladder. [NIH] Urography: Roentgenography of a part of the urinary tract which has been rendered opaque by some opaque medium. [EU]
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CHAPTER 7. MULTIMEDIA ON LUPUS Overview Information on lupus can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on lupus. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title.
Video Recordings Most diseases do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on lupus is the Combined Health Information Database. You will need to limit your search to “video recording” and “lupus” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “lupus” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on lupus:
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Bodyguard : The Immune System Contact: McNabb and Connoly, 60 Briarwood Ave, Port Credit, (416) 2780566. Altschul Group Corporation, 1560 Sherman Ave Ste 100, Evanston, IL, 60201, (847) 328-6700. Summary: This videorecording hosted by Megan Follows focuses on the human immune system. Computer generated graphics and animated diagrams help to explain what the immune system is and what it does. The video discusses transplants, auto-immune diseases including lupus and diabetes, allergies, Acquired immunodeficiency syndrome (AIDS), and cancer. The video makes the point that a positive attitude plays an important part when confronting disease.
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Stories of Lupus Source: Mosaic Productions, LLC. 1999. (VHS videocassette). Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 toll-free or (301) 670-9292. Website: www.lupus.org/lupus. Price: $14.95 plus shipping and handling; bulk discount available. Summary: This videotape for people who have lupus is a documentary in the journalistic style of CBS newsman Charles Kuralt, who died of complications of lupus. Two people newly diagnosed with this complex autoimmune disease interview a diverse group of people living with lupus. These interviews reveal the mysterious nature of the disease and recount the journey toward wellness and acceptance of a life threatening chronic illness. Narrative by Charles Osgood provides information on lupus and serves as an introduction to the interview segments.
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Lupus: When You Have Been Diagnosed Contact: Minnesota Chapter of the Lupus Foundation of America, Inc. Summary: This videorecording for individuals with lupus focuses on living with lupus. The videotape provides basic facts about lupus, identifies the symptoms of lupus, and presents comments from individuals with lupus and physicians who treat lupus patients. Topics discussed by lupus sufferers include their feelings upon being diagnosed with lupus; the types of illnesses they were told they had prior to their lupus diagnosis; the problems caused by not looking sick; factors to consider in finding the right doctor; the effects of treatment, particularly prednisone; the ways they take care of themselves; the effect of the disease on their relationships with others, including spouses, other family members, and friends; the impact of the disease on child bearing and
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child rearing; the lessons they have learned from having a chronic disease; and the importance of participating in a support group and contacting the Lupus Foundation for information. Participating physicians commented on the diagnosis and treatment of lupus, their interactions with patients, and the activities they suggest to promote the health of lupus patients.
Bibliography: Multimedia on Lupus The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in lupus (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on lupus. For more information, follow the hyperlink indicated: ·
Acthar in therapy. Source: produced by Audio Productions, Inc.; presented by the Armour Laboratories; Year: 1951; Format: Motion picture; United States: The Laboratories, c1951
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Autoimmune diseases. Source: [presented by] Journal of women's health; Year: 1993; Format: Videorecording; Bethesda, MD: BioConferences International, c1993
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Collagen-vascular diseases. Source: Kenneth H. Neldner; Year: 1973; Format: Slide; New York: Medcom, c1973
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Current concepts in collagen vascular diseases. Source: presented by the Department of Pediatrics, Emory University, School of Medicine; Year: 1983; Format: Videorecording; Atlanta, Ga.: Emory Medical Television Network, 1983
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Cutaneous immunofluorescence in L.E. and the blistering diseases. Source: Dept. of Dermatology, Emory University School of Medicine; Year: 1978; Format: Videorecording; Atlanta: Georgia Regional Medical Television Network: [for loan or sale by A. W. Calhoun Medical Library], 1978
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Drug-induced systemic lupus erythematosus. Source: Dept. of Medicine, Emory University, School of Medicine; Year: 1978; Format: Videorecording; Atlanta: Georgia Regional Medical Television Network: [for loan and sale by A. W. Calhoun Medical Library], 1978
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DxR, Linda Gilman. Source: developed by DxR Development Group, Inc; Year: 1995; Format: Electronic resource; Carbondale, IL: DxR Development Group, c1995
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Glomerulonephritis . Year: 1986; Format: Slide; [Columbus, Ohio]: Center for Continuing Medical Education, the Ohio State University College of Medicine, [1986]
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Hypersensitivity. Source: [presented by] the Bay Area Chapter of the Lupus Foundation of America; Year: 1981; Format: Videorecording; [San Jose, Calif.]: The Foundation, [1981]
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Idiopathic papulosquamous disorders, drug reactions, connective tissue immunopathies and bullous diseases. Source: [Milton R. Okun]; Year: 1981; Format: Slide; Canton, Mass.: Dermatopathology Foundation, c1981
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Lupas subsets as manifested in dermatologic disease [videorecording]. Source: [presented by] the Marshfield Regional Video Network, in cooperation with Marshfield Clinic & St. Joseph's Hospital; Year: 1981; Format: I.e. lupus; Marshfield, WI: The Network, 1981
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Lupus: wolf in disguise. Source: Los Angeles County Medical Association; produced by Dave Bell Associates; Year: 1974; Format: Videorecording; Garden Grove, Ca.: Trainex, 1974
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Lupus erythematosus, collagen-vascular diseases, and eczema. Source: Dept. of Medicine, Emory University, School of Medicine; Year: 1979; Format: Videorecording; Atlanta: Emory Medical Television Network: [for loan and sale by A. W. Calhoun Medical Library, 1979]
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Lupus-- insights, emotions, encouragements. Source: written and produced by William & Estelle Gill, in cooperation with the Lupus Foundation of America, Inc., Marcy Zitron Chapter, Columbus, Ohio; Year: 1993; Format: Videorecording; Columbus, Ohio: Production House; Media, PA: Media Inc., c1993
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Mechanisms of autoimmunity and systemic lupus erythematosus. Source: with Bruce N. Cronstein; Year: 1988; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, 1988
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Medical management of rheumatoid arthritis. Source: with Gene V. Ball and Warren D. Blackburn; Year: 1987; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, c1987
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Oral manifestations of dermal lesions. Source: produced by the American Dental Association, Council on Dental Therapeutics; Year: 1968; Format: Slide; Chicago, Ill.: The Association, 1968
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Practical rheumatology. Source: Council on Continuing Physician Education; Year: 1978; Format: Videorecording; Chicago: The Council, c1978
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Rare diseases, orphan drugs : living on the edge. Source: a presentation of Films for the Humanities & Sciences; [presented by] WLIW21, Long Island Public Television; Year: 1998; Format: Videorecording; Princeton, NJ: Films for the Humanities & Sciences, c1998
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Rheumatology. Source: Frank Schmid; Year: 1977; Format: Sound recording; [Park Ridge, Ill.]: ASCME, p1977
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Systemic lupus erythematosis. Source: presented by the Department of Pediatrics, Emory University, School of Medicine; Year: 1984; Format: Videorecording; Atlanta, Ga.: Emory Medical Television Network, 1984
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Systemic lupus erythematosus (SLE) : it means some changes. Source: Biomedical Media Production Unit, the University of Michigan Medical Center, Office of Educational Resources & Research; Year: 1981; Format: Videorecording; Ann Arbor, Mich.: University of Michigan, c1981
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Systemic lupus erythematosus. Source: Ellen M. Ginzler; Year: 1979; Format: Slide; [New York]: Medcom, c1979
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Systemic lupus. Source: produced by Audio Master; Year: 1988; Format: Sound recording; [Atlanta, Ga.]: American Rheumatism Association, [1988]
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Treatment of lupus. Source: presented by the Department of Medicine, Emory University, School of Medicine; Year: 1985; Format: Videorecording; Atlanta, Ga.: Emory Medical Television Network, 1985
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Voices of lupus. Source: [presented by] Films for the Humanities & Sciences, the Wolf Pack and the Hospital for Special Surgery; a Harriet Fier & Stephen Mantell Production; Year: 1992; Format: Videorecording; Princeton, N.J.: Films for the Humanities & Sciences, c1992
Vocabulary Builder Antihistamine: A drug that counteracts the action of histamine. The antihistamines are of two types. The conventional ones, as those used in allergies, block the H1 histamine receptors, whereas the others block the H2 receptors. Called also antihistaminic. [EU] Antimicrobial: Killing microorganisms, or suppressing their multiplication or growth. [EU] Bullous: Pertaining to or characterized by bullae. [EU] Candidiasis: Infection with a fungus of the genus Candida. It is usually a
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superficial infection of the moist cutaneous areas of the body, and is generally caused by C. albicans; it most commonly involves the skin (dermatocandidiasis), oral mucous membranes (thrush, def. 1), respiratory tract (bronchocandidiasis), and vagina (vaginitis). Rarely there is a systemic infection or endocarditis. Called also moniliasis, candidosis, oidiomycosis, and formerly blastodendriosis. [EU] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Eczema: A pruritic papulovesicular dermatitis occurring as a reaction to many endogenous and exogenous agents, characterized in the acute stage by erythema, edema associated with a serous exudate between the cells of the epidermis (spongiosis) and an inflammatory infiltrate in the dermis, oozing and vesiculation, and crusting and scaling; and in the more chronic stages by lichenification or thickening or both, signs of excoriations, and hyperpigmentation or hypopigmentation or both. Atopic dermatitis is the most common type of dermatitis. Called also eczematous dermatitis. [EU] Hypercalcemia: Abnormally high level of calcium in the blood. [NIH] Hypotension: Abnormally low blood pressure; seen in shock but not necessarily indicative of it. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Pilocarpine: A slowly hydrolyzed muscarinic agonist with no nicotinic effects. Pilocarpine is used as a miotic and in the treatment of glaucoma. [NIH] Stenosis: Narrowing or stricture of a duct or canal. [EU]
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CHAPTER 8. PERIODICALS AND NEWS ON LUPUS Overview Keeping up on the news relating to lupus can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on lupus. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover lupus beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow.
News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on lupus is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing.
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PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “lupus” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased. The following is typical of press releases that can be found on PR Newswire: ·
Hospital for Special Surgery Ranked No. 1 in Orthopedics & Rheumatology In Northeast Summary: San Diego, Aug. 6 /PRNewswire-FirstCall/ -- La Jolla Pharmaceutical Company (Nasdaq: LJPC) reported a net loss for the second quarter ended June 30, 2002 of $11.4 million or $0.27 per share (on 42.4 million weighted average shares) compared to a net loss of $6.1 million or $0.17 per share (on 35.2 million weighted average shares) for the second quarter of 2001. The net loss for the six months ended June 30, 2002 was $19.5 million or $0.47 per share (on 41.7 million weighted average shares) compared to a net loss of $12.7 million or $0.37 (on 33.9 million weighted average shares) per share for the same period in 2001. Research and development expenses increased to $9.7 million for the three months and $16.9 million for the six months ended June 30, 2002 compared to $5.9 million and $12.4 million for the same periods in 2001, respectively. The increase was primarily due to expenses associated with the Company's ongoing Phase III clinical trial of its lupus drug candidate, LJP 394, and the Phase I/II clinical trial of its thrombosis drug candidate, LJP 1082, which was initiated in November 2001. Cash, cash equivalents and short-term investments as of June 30, 2002 were $74.9 million compared to $47.0 million as of December 31, 2001. In January 2002, the Company sold 7.0 million shares of its common stock in a private placement for net proceeds of approximately $48.3 million. La Jolla Pharmaceutical Company is a biotechnology company leading the development of therapeutics for antibody-mediated autoimmune diseases afflicting several million people in the United States and Europe. The Company is conducting a Phase III trial of LJP 394 in patients with lupus kidney disease, a leading cause of sickness and death in these
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patients. The Company is also conducting a Phase I/II trial of LJP 1082 for the treatment of antibody-mediated thrombosis, a condition in which patients suffer from recurrent stroke, deep-vein thrombosis and other thrombotic events. The Company's common stock is traded on The Nasdaq Stock Market under the symbol LJPC. For more information about the Company, visit our Web site: http://www.ljpc.com . Patients interested in the Phase III lupus trial may call 1-800-30-LUPUS for information. Reuters The Reuters' Medical News database can be very useful in exploring news archives relating to lupus. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to http://www.reutershealth.com/frame2/arch.html and search by “lupus” (or synonyms). The following was recently listed in this archive for lupus: ·
B-lymphocyte superantigen-based therapy under investigation for lupus Source: Reuters Industry Breifing Date: February 26, 2002 http://www.reuters.gov/archive/2002/02/26/business/links/20020226 scie003.html
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Interferon-inducible genes a new potential target in lupus Source: Reuters Medical News Date: February 25, 2002 http://www.reuters.gov/archive/2002/02/25/professional/links/20020 225scie006.html
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Etanercept use linked to systemic lupus erythematosus Source: Reuters Industry Breifing Date: February 15, 2002 http://www.reuters.gov/archive/2002/02/15/business/links/20020215 clin014.html
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Arthritis drug linked to rare lupus side effect Source: Reuters Health eLine Date: February 15, 2002 http://www.reuters.gov/archive/2002/02/15/eline/links/20020215elin 014.html
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Hispanics may be at increased risk of early lupus damage Source: Reuters Medical News Date: January 10, 2002 http://www.reuters.gov/archive/2002/01/10/professional/links/20020 110epid003.html
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Smoking linked to development of systemic lupus erythematosus Source: Reuters Medical News Date: December 31, 2001 http://www.reuters.gov/archive/2001/12/31/professional/links/20011 231epid006.html
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Smoking ups lupus risk: report Source: Reuters Health eLine Date: December 20, 2001 http://www.reuters.gov/archive/2001/12/20/eline/links/20011220elin 009.html
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La Jolla lupus drug receives European orphan drug designation Source: Reuters Industry Breifing Date: November 28, 2001 http://www.reuters.gov/archive/2001/11/28/business/links/20011128 rglt003.html
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Interferon-alpha may play key role in lupus autoimmunity Source: Reuters Medical News Date: November 16, 2001 http://www.reuters.gov/archive/2001/11/16/professional/links/20011 116scie001.html
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Study suggests potential new way to treat lupus Source: Reuters Health eLine Date: November 15, 2001 http://www.reuters.gov/archive/2001/11/15/eline/links/20011115elin 014.html
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Traditional Framingham factors do not explain increased risk of CVD in lupus Source: Reuters Medical News Date: November 14, 2001 http://www.reuters.gov/archive/2001/11/14/professional/links/20011 114clin010.html
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La Jolla presents results of phase II/III trial of lupus drug Source: Reuters Industry Breifing Date: November 14, 2001 http://www.reuters.gov/archive/2001/11/14/business/links/20011114 drgd001.html
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Genelabs can seek EU-wide approval for lupus drug Source: Reuters Industry Breifing Date: June 20, 2002 http://www.reuters.gov/archive/2002/06/20/business/links/20020620 rglt001.html
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Antibodies identify fetal heart block risk in expectant mothers with lupus Source: Reuters Medical News Date: June 13, 2002 http://www.reuters.gov/archive/2002/06/13/professional/links/20020 613clin002.html
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Genelabs expects FDA decision on Lupus drug by August Source: Reuters Industry Breifing Date: May 29, 2002 http://www.reuters.gov/archive/2002/05/29/business/links/20020529 rglt003.html
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Study finds "unexpected" steroid levels in pregnant lupus patients Source: Reuters Medical News Date: May 17, 2002 http://www.reuters.gov/archive/2002/05/17/professional/links/20020 517clin001.html
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Sharp rise in lupus deaths noted among black women Source: Reuters Health eLine Date: May 02, 2002 http://www.reuters.gov/archive/2002/05/02/eline/links/20020502elin 016.html
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Key proteins linked to pregnancy loss in lupus Source: Reuters Health eLine Date: February 26, 2002 http://www.reuters.gov/archive/2002/02/26/eline/links/20020226elin 021.html
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Human Genome Sciences to initiate phase I study for the treatment of lupus Source: Reuters Industry Breifing Date: November 01, 2001 http://www.reuters.gov/archive/2001/11/01/business/links/20011101 drgd004.html
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Scientists learn how lupus destroys nervous system Source: Reuters Health eLine Date: October 31, 2001 http://www.reuters.gov/archive/2001/10/31/eline/links/20011031elin 025.html
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Distinct risk factors identify lupus patients at risk of cardiovascular disease Source: Reuters Medical News Date: October 19, 2001 http://www.reuters.gov/archive/2001/10/19/professional/links/20011 019epid005.html
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Interferon-inducible lfi202 implicated as candidate gene for lupus Source: Reuters Medical News Date: September 26, 2001 http://www.reuters.gov/archive/2001/09/26/professional/links/20010 926scie004.html
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Oral cyclophosphamide may have advantages in severe lupus nephritis Source: Reuters Industry Breifing Date: August 20, 2001 http://www.reuters.gov/archive/2001/08/20/business/links/20010820 clin017.html
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FDA issues 'not approvable' letter on Genelabs, Watson lupus drug Source: Reuters Industry Breifing Date: June 27, 2001 http://www.reuters.gov/archive/2001/06/27/business/links/20010627 rglt002.html
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Lupus nephritis may be mediated by molecular mimicry Source: Reuters Medical News Date: May 16, 2001 http://www.reuters.gov/archive/2001/05/16/professional/links/20010 516scie001.html
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Aortic stiffness may be early sign of CHD in women with lupus Source: Reuters Medical News Date: May 01, 2001 http://www.reuters.gov/archive/2001/05/01/professional/links/20010 501clin007.html
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Headaches not part of lupus disease spectrum Source: Reuters Medical News Date: April 27, 2001 http://www.reuters.gov/archive/2001/04/27/professional/links/20010 427epid003.html
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Fearing deadlock, FDA panel defers vote on Genelabs' lupus drug Source: Reuters Industry Breifing Date: April 19, 2001 http://www.reuters.gov/archive/2001/04/19/business/links/20010419 rglt009.html
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Lupus patients should be evaluated for migraine Source: Reuters Medical News Date: April 11, 2001 http://www.reuters.gov/archive/2001/04/11/professional/links/20010 411epid003.html
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Anti-C1q antibodies are associated with lupus nephritis activity Source: Reuters Medical News Date: March 30, 2001 http://www.reuters.gov/archive/2001/03/30/professional/links/20010 330clin003.html
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Increased risk of lupus nephritis linked to genetic factor in Caucasians Source: Reuters Medical News Date: March 13, 2001 http://www.reuters.gov/archive/2001/03/13/professional/links/20010 313clin007.html
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Experimental agent may prevent flares of lupus nephritis Source: Reuters Industry Breifing Date: March 07, 2001 http://www.reuters.gov/archive/2001/03/07/business/links/20010307 drgd002.html
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La Jolla beats Street by 6 cents, attracts investors with promising lupus product Source: Reuters Industry Breifing Date: February 26, 2001 http://www.reuters.gov/archive/2001/02/26/business/links/20010226 inds014.html
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Antimalarial helps prevent bone loss in women with lupus Source: Reuters Medical News Date: February 23, 2001 http://www.reuters.gov/archive/2001/02/23/professional/links/20010 223clin010.html
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Gene mutation linked to lupus in mice Source: Reuters Health eLine Date: January 29, 2001 http://www.reuters.gov/archive/2001/01/29/eline/links/20010129elin 012.html
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Watson plans to launch lupus drug by mid-2001 Source: Reuters Industry Breifing Date: January 12, 2001 http://www.reuters.gov/archive/2001/01/12/business/links/20010112 inds005.html
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Hepatitis C infection more prevalent in lupus patients than healthy controls Source: Reuters Medical News Date: January 05, 2001 http://www.reuters.gov/archive/2001/01/05/professional/links/20010 105epid004.html
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Repeat renal biopsies useful in lupus management Source: Reuters Medical News Date: January 01, 2001 http://www.reuters.gov/archive/2001/01/01/professional/links/20010 101clin011.html
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Imaging technique may detect active neuropsychiatric lupus Source: Reuters Medical News Date: December 25, 2000 http://www.reuters.gov/archive/2000/12/25/professional/links/20001 225clin008.html
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Autoantibodies block fetal serotonin receptor to cause heart block in neonatal lupus Source: Reuters Medical News Date: November 29, 2000 http://www.reuters.gov/archive/2000/11/29/professional/links/20001 129scie006.html
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Genelabs' Aslera improves symptoms in lupus patients in phase III trials Source: Reuters Industry Breifing Date: October 31, 2000 http://www.reuters.gov/archive/2000/10/31/business/links/20001031 drgd004.html
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FDA grants priority review for Genelabs' lupus drug Aslera Source: Reuters Industry Breifing Date: October 25, 2000 http://www.reuters.gov/archive/2000/10/25/business/links/20001025 rglt002.html
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Mycophenolate mofetil plus prednisolone effective for lupus nephritis Source: Reuters Medical News Date: October 19, 2000 http://www.reuters.gov/archive/2000/10/19/professional/links/20001 019clin014.html
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La Jolla initiates phase III trial of lupus kidney disease drug Source: Reuters Industry Breifing Date: October 19, 2000 http://www.reuters.gov/archive/2000/10/19/business/links/20001019 drgd001.html
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Potential marker identified for neuropsychiatric lupus Source: Reuters Medical News Date: October 11, 2000 http://www.reuters.gov/archive/2000/10/11/professional/links/20001 011drgd001.html
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House passes lupus research bill Source: Reuters Health eLine Date: October 11, 2000 http://www.reuters.gov/archive/2000/10/11/eline/links/20001011elin 034.html
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House committee approves research, Lupus bills Source: Reuters Health eLine Date: September 27, 2000 http://www.reuters.gov/archive/2000/09/27/eline/links/20000927elin 023.html
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HRT reduces bone loss in young lupus patients on chronic steroid therapy Source: Reuters Medical News Date: September 26, 2000 http://www.reuters.gov/archive/2000/09/26/professional/links/20000 926clin005.html
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Genelabs files NDA for lupus treatment Aslera Source: Reuters Industry Breifing Date: September 26, 2000 http://www.reuters.gov/archive/2000/09/26/business/links/20000926 rglt003.html
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La Jolla Pharmaceutical gets orphan status for lupus drug Source: Reuters Industry Breifing Date: September 07, 2000 http://www.reuters.gov/archive/2000/09/07/business/links/20000907 rglt009.html
The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine.
Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name.
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Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “lupus” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about.
Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “lupus” (or synonyms). If you know the name of a company that is relevant to lupus, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks.
BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “lupus” (or synonyms).
Newsletters on Lupus Given their focus on current and relevant developments, newsletters are often more useful to patients than academic articles. You can find newsletters using the Combined Health Information Database (CHID). You will need to use the “Detailed Search” option. To access CHID, go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. Your investigation must limit the search to “Newsletter” and “lupus.” Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter.” By making these selections and typing in “lupus” or synonyms into the “For these words:” box, you will only receive results on newsletters. The following list was generated using the options described above:
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Lupus News Source: Rockville, MD: Lupus Foundation of America (LFA). 1994. 12 p. (average). Contact: Available from Lupus Foundation of America (LFA). 4 Research Place, Suite 180, Rockville, MD 20850-3226. (301) 670- 9292 or (800) 5589486; FAX (301) 670-9486. Price: Free with membership. Summary: This newsletter is published three times a year for members of the Lupus Foundation of America (LFA). A typical issue includes articles about the medical and psychosocial aspects of lupus, specific forms of lupus, and special issues for women. Other features include interviews with health professionals, research summaries, news, and announcements.
Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “lupus” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as it is updated every 3 months. The following is a typical result when searching for newsletter articles on lupus: ·
Managing Lupus Fatigue Source: Lupus News. 21(1): 5. Spring 2001. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter article provides people who have lupus with information on managing fatigue. Many people who have a chronic condition such as lupus report that fatigue is one of their most disabling symptoms. Goals for the management of fatigue include resolving the
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underlying problem, increasing understanding of fatigue, and reducing or alleviating it. Fatigue management strategies may include conducting a self appraisal of fatigue, gaining optimal control of disease activity, reinterpreting symptoms, practicing energy conservation behaviors, and improving sleep and rest behaviors. 2 references. ·
Smoking and Lupus: A Double Whammy! Source: Lupus News. 20(3): 3,9. Summer 2000. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter article provides people who have lupus with information on the impact of smoking on lupus. The article presents evidence demonstrating that smoking complicates and accelerates the adverse effects of lupus. For example, smoking cigarettes increases the risk of pneumonococcal pneumonia and chronic bronchitis, and people who have lupus are more susceptible to infections, particularly respiratory infections. People who have lupus and who smoke have a greater risk of coronary artery disease. Both lupus and smoking can affect blood vessels and circulation, kidney and liver function, wound healing, the digestive system, hair, and bone density. In addition, lupus can cause skin disease, which may be effectively treated with antimalarial medications, but smoking interferes with the benefits of these medications. The article also offers tips for smoking cessation.
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Fibromyalgia Source: Minnesota Lupus News. 23(4): 1,7,9. August/September 1999. Contact: Available from Minnesota Chapter, Lupus Foundation of America, Inc. International Market Square, 275 Market Street, Suite C19, Minneapolis, MN 55405-1620. (800) 645-1131 or (612) 375-1131. Summary: This newsletter article provides people who have fibromyalgia (FM) with information on this syndrome, which is characterized by chronic widespread pain. FM more often affects women than men, and high incidence of FM has been described in patients who have connective tissue disease. The presence of chronic widespread pain and 11 out of 18 specified tender points best distinguishes FM patients from patients who have other musculoskeletal diseases. FM is not an inflammatory condition because muscle biopsies have failed to show inflammatory changes, physical examinations have not revealed joint swelling, and laboratory tests of inflammation have been found to be normal. Although FM has been suspected of having an autoimmune basis, most studies
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have not found an increase in autoimmune markers. Evidence suggests that there may be a causal link between certain types of trauma and FM. Most studies suggest that FM is a chronic condition that does not change much over time. There is no cure for FM, but nonpharmacologic modalities such as aerobic exercise, cognitive behavioral therapy, and drug injections at tender points have been shown to be modestly beneficial. The tricyclic drugs amitriptyline and cyclobenzaprine have been shown to be effective in controlled trials, but their long term efficacy has been questioned. There is no evidence that nonsteroidal antiinflammatory drugs and glucocorticoids are effective therapeutic agents. ·
Skin Changes in People With Lupus Source: Lupus News. 20(1): 6-7. Winter 1999-2000. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter article provides people who have systemic lupus erythematous (SLE) with information on the skin changes associated with it. Changes in the skin, hair, nails, and mucous membranes are very common in people who have SLE. Specific skin rashes associated with SLE include the butterfly blush or rash, subacute cutaneous lupus lesions, and chronic discoid lupus lesions. The butterfly rash is a faint or prominent red rash that appears over the cheeks and bridge of the nose and may be flat or raised. This rash is frequently confused with a similar rash called acne rosacea. Subacute cutaneous lupus lesions may look either like red pimples or flat lesions when the rash first occurs. As the rash persists, the red pimples become bigger and scales appear, or the flat lesions get bigger by expanding outward. Chronic discoid lupus lesions are slightly elevated pink or red areas that form a crust or flakes on the surface. Lesions are itchy and become bigger by spreading outward. Nonspecific rashes, including vasculitic rashes, are common in people who have SLE. Hair loss occurs in about 45 percent of people who have lupus at some time during their disease. Hair loss usually occurs all over the head, but sometimes the hair may fall out in patches. Nail changes occur in about 10 percent of patients and involve cracking, curling, and even nail loss. In addition, mucosal ulcers are usually found on the roof of the mouth. Treatment of skin problems includes using antimalarial drugs such as hydroxychloroquine; staying out of the sun; and wearing protective sunscreen, a hat with a broad brim, and long sleeves when outside. 3 figures.
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Oral Health, Oral Disease, and Lupus Source: Lupus News. 19(4): 1-3. Fall 1999. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter article provides people who have systemic lupus erythematous (SLE) with information on oral complaints or complications. The formation of oral ulcers is a classic finding in SLE. These lesions are usually found on the roof of the mouth, on the gums, or on the mucosa lining the lips and cheeks. SLE causes increased risk of infection, so a dentist may use antibiotics to help treat or prevent bacterial infection in a patient who has lupus. A low platelet count may also develop. If this occurs, patients should inform their dentist because uncontrolled bleeding could occur from a tooth extraction or teeth cleaning. Dental procedures that might cause a significant amount of bleeding can allow a large number of bacteria into the bloodstream, possibly resulting in bacterial endocarditis. Dentists may prescribe antibiotics before a dental appointment if a patient is thought to have valvular abnormalities. Periodontal disease is common in people who have SLE, especially people taking immunosuppressive drugs or steroids. Dry mouth is probably the oral complication that most likely contributes to dental disease. When dry mouth occurs, the type of bacteria that flourish are those that cause tooth decay. Avoidance of tooth decay should be possible with a daily commitment to selected preventive techniques. 4 references.
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Lupus and the Young Adult Source: Minnesota Lupus News. 23(5): 1,4,9. October/November 1999. Contact: Available from Minnesota Chapter, Lupus Foundation of America, Inc. International Market Square, 275 Market Street, Suite C19, Minneapolis, MN 55405-1620. (800) 645-1131 or (612) 375-1131. Summary: This newsletter article provides young adults who have lupus with information on the impact of this disease on areas such as education, dating, marriage, and parenthood. Often young adults are in college or graduate school, or are continuing their studies in some way, and lupus can create difficulties in completing educational plans. Learning to be flexible and communicating with professors will help young adults complete their education. Lupus can also create the need for adjustments and serious compromises in the areas of dating and marriage. Couples must realize that lupus is a lifelong illness and will permanently change the dynamic of their relationship in both positive and negative ways.
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Being a parent with lupus is made easier by being organized and flexible, having a strong support system, and talking with one's children about lupus in terms they can understand. ·
Systemic Lupus Erythematosus: Women's Health Issues Source: Bulletin on the Rheumatic Diseases. 49(8): 1-3. 2001. Contact: Available from Arthritis Foundation. 1330 West Peachtree Street, Atlanta, GA 30309. (404) 872-7100. Fax (404) 872-9559. Summary: This newsletter article provides health professionals with information on systemic lupus erythematosus (SLE) in relation to issues specific to women's health, including pregnancy, contraception, fertility, sexuality, management of menopause, osteoporosis, coronary artery disease, and chronic fatigue. Pregnancy is high risk for both the woman with SLE and her fetus. Pregnant women with SLE are at higher risk for both preeclampsia and premature membrane rupture. Fetal problems associated with SLE include preterm birth, intrauterine growth retardation, placental insufficiency, pregnancy loss, and congenital heart block. Although barrier contraception is the safest method in SLE, other options include oral contraceptives, the intrauterine device, and tubal ligation. Fertility is usually not a problem in women with SLE, but some SLE treatment regimens, such as monthly pulse intravenous cyclophosphamide, put fertility at risk. Women with SLE may face sexuality issues because their body image is affected both by the disease and by its treatment. More women with SLE are reaching menopause, and studies have suggested that estrogen replacement therapy does not increase SLE flares. Both premenopausal and postmenopausal women with SLE are at risk for osteoporosis because of the use of prednisone. The major cause of death in women with SLE is cardiovascular disease, so they should be considered as candidates for screening for early atherosclerosis. Chronic fatigue is a major complaint of women with SLE. 4 tables and 18 references.
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Getting to the Heart of the Matter in Systemic Lupus and Rheumatoid Arthritis Source: Bulletin on the Rheumatic Diseases. 50(5): 1-4. 2001. Contact: Available from Arthritis Foundation. 1330 West Peachtree Street, Atlanta, GA 30309. (800) 268-6942 or (404) 872-7100. Fax (404) 872-9559. Website: www.arthritis.org. Summary: This newsletter article provides health professionals with information on the extent of atherosclerotic cardiovascular disease in systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA),
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potential risk factors for cardiovascular disease in SLE and RA, theories on pathogenesis, and management strategies. Risk factors for cardiovascular disease in SLE and RA appear to include nonspecific factors such as hyperlipidemia, diabetes mellitus, smoking, obesity, hypertension, and sedentary lifestyle. Features of SLE and RA that may contribute to atherosclerosis include glucocorticoid use and elevated homocysteine. Although hormonal factors may have a role in SLE and RA, the impact of sex hormones on the development of atherosclerosis in these diseases may be different. Theories on the pathogenesis of cardiovascular disease in SLE and RA focus on inflammatory and immunological mechanisms. Strategies include physician awareness of the increased risk of cardiovascular disease in young women with SLE and RA and patient education on the contribution of lifestyle factors to the risk of heart disease. Other strategies include eliminating traditional cardiovascular risk factors and minimizing potential inflammatory and immune mediated factors. 2 tables and 11 references. ·
Abnormal Apoptosis in Systemic Lupus Source: Lupus News. 21(1): 16-17. Spring 2001. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter article provides health professionals and people who have systemic lupus erythematosus (SLE) with information on abnormal apoptosis. Evidence suggests that problems with the apoptosis machinery may play a key role in causing SLE. Normally, lymphocytes are responsible for attacking and eliminating foreign organisms, but in people who have SLE, these cells turn against the body. Lymphocytes of people who have SLE show increased rates of spontaneous apoptosis and defective activation induced apoptosis. Enhanced spontaneous apoptosis may be responsible for the release of antigenic material from cell nuclei, triggering the production of antinuclear autoantibodies. However, defective apoptosis of dysfunctional lymphocytes may play a critical role in lupus. Drugs used to treat SLE intensify the apoptosis of lymphocytes. Thus, a deficiency rather than an increase in apoptosis may have a primary role in disease pathogenesis. Researchers believe that the development of lupus is influenced by genetic and environmental factors such as ultraviolet light, infectious agents, viruses, and bacteria. Understanding the signaling abnormalities in SLE may create novel approaches for treatment. Pinpointing apoptosis defects and devising therapeutic corrections have become key targets in lupus research. 2 tables.
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Musculoskeletal Aspects of Systemic Lupus Erythematosus (SLE) -Part 2 Source: Lupus News. 19(4): 10-11. Fall 1999. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter article, the second of two parts, provides health professionals with information on the musculoskeletal aspects of systemic lupus erythematosus (SLE). Besides arthritis, osteonecrosis is the other major skeletal problem in SLE. Osteonecrosis involves the death of bone as a result of loss of blood flow, followed by death of all other cellular elements. The condition has four pathological stages. Imaging studies are used to clinically detect osteonecrosis, and five radiologic stages have been established. Although the cause of osteonecrosis in people who have SLE is unknown, the use of high doses of glucocorticosteroids may have a role in its etiology. Other hypothesized but unproven potential factors include an increased tendency for blood clots, fatty emboli, increased pressure inside the joint capsule, increased bone marrow pressure, and swelling inside the bone cavity. Although any joint may be involved, the femoral head is the most common location for osteonecrosis, making the hip the most commonly involved joint. The most commonly recommended procedure to treat osteonecrosis of the femoral head is decompression of the femoral head. Joint replacement is also another option. Fibromyalgia and osteoporosis are two conditions that may co-occur with SLE.
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Complex Genetic Basis of Systemic Lupus Erythematosus-Part 1, The Source: Lupus News. 19(4): 12-13. Fall 1999. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter letter, the first of two parts, provides people who have systemic lupus erythematosus (SLE) with information on the genetic basis of SLE. The inheritance patterns of SLE are complex and the precise genes involved in the genetic susceptibility may vary from population to population. Not only is the prevalence of SLE different in different populations, but the natural history of the disease is different in different populations. This is consistent with the belief that different combinations of genes play a role in the genetic susceptibility in different populations. Studies in which more than one family member is affected with SLE are being conducted to try to directly identify the genes
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involved in SLE. When many families are studied, specific regions of the chromosomes can be identified as being involved on a population basis. As a result of such family studies, more than 100 genes now are thought to be involved in the genetic susceptibility of SLE. Although specific genes are sometimes identified through family studies, other types of studies are performed to look for the specific gene within an identified region. ·
Lupus for the Non-Rheumatologist Source: Bulletin on the Rheumatic Diseases. 48(9): 1-4. 1999. Contact: Available from Arthritis Foundation. 1330 West Peachtree Street, Atlanta, GA 30309. (404) 872-7100. Fax (404) 872-9559. Summary: This newsletter article provides health professionals with information on the etiology, pathogenesis, classification, epidemiology, clinical presentation, diagnosis, treatment, and prognosis of systemic lupus erythematosus (SLE). Most people who have SLE are women, and Native Americans are most susceptible to developing it. The cause of SLE, which is an autoimmune multisystem disease with several variants, is unknown. Possible contributing factors include environmental provocation, chemical exposure, infections, estrogen containing hormones, and certain forms of stress. Types of lupus include SLE, chronic cutaneous lupus, drug induced lupus, mixed connective tissue disease, antiphospholipid syndrome, and neonatal lupus. SLE can present in many different ways. Half of the patients with SLE have musculoskeletal problems, skin changes, cognitive dysfunction, and serositis. The remainder have more serious disease activity, with major internal organ involvement. Diagnosis involves obtaining a medical history, performing a physical examination, and ordering various laboratory tests, including an antinuclear antibody test. Treatment involves educating the patient about physical measures he or she can take to manage SLE, using topical glucocorticoids for chronic cutaneous lupus, taking low doses of prednisone, and taking immunosuppressants. The overall prognosis for patients who have SLE is excellent. 1 table and 5 references.
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Fatigue in Systemic Lupus Erythematosus Source: Lupus News. 19(2): 4-5. Spring 1999. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus.
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Summary: This newsletter article provides people who have systemic lupus erythematous (SLE) with information on the causes and treatment of fatigue. Although lupus is associated with fatigue, not all fatigue in people who have SLE is due to the disease. Inflammation can lead to fatigue in an autoimmune disease like lupus. During inflammation, substances called interleukins are released in the body. Interleukins have a significant effect on many functions of the body and mind. For example, they can cause the adrenal glands responsible for cortisone to be less responsive to the stimulation of ACTH and, thus, the release of cortisol could become abnormal. Drugs typically used to treat lupus and lupus complications, including nonsteroidal anti-inflammatory drugs, analgesics, hypnotics, seizure suppressants, and drugs for abdominal pain and spasm, may themselves cause fatigue. Other reasons for fatigue include depression, anxiety, and disease complications. The presence of a coexisting condition called fibromyalgia may also cause fatigue. Fatigue may be lessened by making behavioral adjustments such as starting a regular program of aerobic exercises, taking medication that restores the late stage of sleep, avoiding smoking, and limiting the intake of coffee and alcohol. ·
Neonatal Lupus Source: Minnesota Lupus News. 23(5): 3,6. October/November 1999. Contact: Available from Minnesota Chapter, Lupus Foundation of America, Inc. International Market Square, 275 Market Street, Suite C19, Minneapolis, MN 55405-1620. (800) 645-1131 or (612) 375-1131. Summary: This newsletter article uses a question and answer format to provide parents with information on neonatal lupus. This rare condition does not develop into systemic lupus erythematosus (SLE), is typically not serious, and usually disappears spontaneously in a few weeks. The term neonatal lupus is used to describe three major symptoms found in newborns. The most common symptom is a rash that is usually scattered over the body. The next most common symptom is an abnormal blood count. The rarest abnormality, which is serious, is a heart rhythm abnormality known as congenital heart block. The presence of anti-Ro or anti-La antibodies in the mother is predictive of the risk of delivering a child with neonatal lupus symptoms. Most children and adolescents born with neonatal lupus appear to develop normally and have no higher risk of developing SLE than any other close relative of a patient with lupus. However, those with heart disease need to be evaluated by a cardiologist because many will eventually need pacemakers or other treatments.
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Lupus and Pregnancy: Can They Go Together? Source: Lupus News. 20(5): 8-11. Winter 2000. Contact: Available from Lupus Foundation of America. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Fax (301) 670-9486. Website: www.lupus.org/lupus. Summary: This newsletter article uses a question and answer format to provide women who have lupus with information on managing a pregnancy. Lupus is more common among women than men, and it is often diagnosed during the childbearing years. Therefore, women with lupus are faced with the difficult decision of whether or not to become pregnant. Most women who have lupus can have successful pregnancies. One of the most common questions women who have lupus ask is how pregnancy will affect their lupus. Although recent studies show that lupus flares are common in pregnancy, most are mild or moderate and are manageable. Women who have lupus nephritis appear to be at more risk during pregnancy than women without kidney disease, and recent studies support this observation. However, most women with lupus nephritis, particularly women with well controlled lupus nephritis, have a satisfactory pregnancy outcome. Another issue of concern to women with lupus is how it will affect them and their baby during pregnancy. Pregnancy loss is one complication. Women who have antiphospholipid syndrome are at particular risk for pregnancy loss. Preeclampsia is a common complication in all pregnancies, but some patients with lupus are at greater risk for this complication than others, including women using steroids, women with kidney damage, and women with lupus nephritis. Other complications that women or their baby may experience include preterm birth, fetal growth impairment, and neonatal lupus erythematosus. Women with lupus may also be concerned about the effect of the drugs used to treat lupus on their pregnancy. Drugs that may safely be used to treat lupus during pregnancy are glucocorticoids. A final issue of concern to women with lupus is prenatal care. The article offers guidelines for prepregnancy, prenatal, and postnatal care and care during labor and delivery.
Academic Periodicals covering Lupus Academic periodicals can be a highly technical yet valuable source of information on lupus. We have compiled the following list of periodicals known to publish articles relating to lupus and which are currently indexed within the National Library of Medicine's PubMed database (follow
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hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on lupus published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical's name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can also visit http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on lupus: ·
Acta Dermato-Venereologica. (Acta Derm Venereol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ac ta+Dermato-Venereologica&dispmax=20&dispstart=0
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Arthritis and Rheumatism. (Arthritis Rheum) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ar thritis+and+Rheumatism&dispmax=20&dispstart=0
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Journal of Clinical Immunology. (J Clin Immunol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Clinical+Immunology&dispmax=20&dispstart=0
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Kidney International. (Kidney Int) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ki dney+International&dispmax=20&dispstart=0
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Leukemia & Lymphoma. (Leuk Lymphoma) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Le ukemia+&+Lymphoma&dispmax=20&dispstart=0
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Pediatric Neurology. (Pediatr Neurol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Pe diatric+Neurology&dispmax=20&dispstart=0
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Psychosomatic Medicine. (Psychosom Med) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ps ychosomatic+Medicine&dispmax=20&dispstart=0
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Scandinavian Journal of Rheumatology. (Scand J Rheumatol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Sc andinavian+Journal+of+Rheumatology&dispmax=20&dispstart=0
Vocabulary Builder Aerobic: 1. having molecular oxygen present. 2. growing, living, or occurring in the presence of molecular oxygen. 3. requiring oxygen for respiration. [EU] Amitriptyline: Tricyclic antidepressant with anticholinergic and sedative properties. It appears to prevent the re-uptake of norepinephrine and serotonin at nerve terminals, thus potentiating the action of these neurotransmitters. Amitriptyline also appears to antaganize cholinergic and alpha-1 adrenergic responses to bioactive amines. [NIH] Bronchitis: Inflammation of one or more bronchi. [EU] Extraction: The process or act of pulling or drawing out. [EU] Interleukins: Soluble factors which stimulate growth-related activities of leukocytes as well as other cell types. They enhance cell proliferation and differentiation, DNA synthesis, secretion of other biologically active molecules and responses to immune and inflammatory stimuli. [NIH] Orthopedics: A surgical specialty which utilizes medical, surgical, and physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Pacemaker: An object or substance that influences the rate at which a certain phenomenon occurs; often used alone to indicate the natural cardiac pacemaker or an artificial cardiac pacemaker. In biochemistry, a substance whose rate of reaction sets the pace for a series of interrelated reactions. [EU] Postnatal: Occurring after birth, with reference to the newborn. [EU] Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Sedentary: 1. sitting habitually; of inactive habits. 2. pertaining to a sitting posture. [EU] Tricyclic: Containing three fused rings or closed chains in the molecular structure. [EU]
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CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience.
NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: ·
Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm
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National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/
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National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html
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National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); fact sheets and guidelines available at http://www.nih.gov/niams/healthinfo/
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NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.28 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:29 ·
Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html
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HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html
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NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html
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Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/
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Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html
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Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html
Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 29 See http://www.nlm.nih.gov/databases/databases.html. 28
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Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/
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Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html
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Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html
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Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html
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MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html
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Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html
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Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html
While all of the above references may be of interest to physicians who study and treat lupus, the following are particularly noteworthy.
The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and lupus using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “lupus” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with lupus. The following is a sample result:
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·
Lupus and Vasculitis Source: Rockville, MD: Lupus Foundation of America, Inc. 1997. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus uses a question and answer format to provide information about vasculitis. It explains that vasculitis is an inflammation of the blood vessels and that it can be caused in rare cases by infection of the blood vessel walls but that it is more commonly caused by an immune or allergic reaction in the vessel walls. The pamphlet lists diseases associated with vasculitis. It outlines the symptoms of vasculitis, including systemic, skin, joint, brain, peripheral nerve, intestinal, heart, lung, kidney, and eye manifestations. The pamphlet stresses the need to consult a physician if vasculitis is suspected, and it explains that vasculitis is diagnosed through information obtained from the medical history, current symptoms, a physical examination, and diagnostic testing. The pamphlet discusses the use of mainstream and experimental methods for treating vasculitis and comments on the outcome for people with vasculitis. The pamphlet also provides information on the Lupus Foundation of America.
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Laboratory Tests Used in the Diagnosis of Lupus Source: Rockville, MD: Lupus Foundation of America, Inc. 1997. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus focuses on the laboratory tests used in the diagnosis of lupus. It outlines the typical manifestations that might lead to suspicion of systemic lupus erythematosus (SLE), including skin, joint, kidney, lining membrane, blood, lung, and nervous system manifestations. The pamphlet then identifies the commonly used tests in the diagnosis of SLE, including the immunofluorescent antinuclear antibody test (ANA), the anti-deoxyribonucleic acid test, the anti-Sm antibody test, tests to detect the presence of immune complexes in the blood, tests to examine the total level of serum complement, the lupus erythematosus cell test, and biopsies. It discusses the meaning of differences in ANA titers, the usefulness of the pattern of the ANA test,
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and the interpretation of laboratory test results. The pamphlet also provides information on the Lupus Foundation of America. ·
Anti-Malarials in the Treatment of Lupus Source: Rockville, MD: Lupus Foundation of America, Inc. 1997. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus uses a question and answer format to discuss the use of antimalarials in the treatment of systemic lupus erythematosus (SLE). The pamphlet briefly reviews the history of the use of antimalarials, identifies the SLE symptoms that antimalarials effectively treat, and highlights the antimalarials most frequently used in North America. Other topics include the way in which antimalarials control SLE, the use of antimalarials in conjunction with other SLE medications, the safety of antimalarial use during pregnancy, and the side effects of antimalarial drugs. A major potential side effect of antimalarial use is possible retinal damage, so an eye examination should be performed prior to beginning treatment with antimalarials and followup examinations should be performed every 3 to 6 months thereafter. The pamphlet also provides information on the Lupus Foundation of America.
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Systemic Lupus and the Nervous System Source: Rockville, MD: Lupus Foundation of America, Inc. 1997. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus discusses nervous system involvement in systemic lupus erythematosus (SLE). It explains how lupus may affect the nervous system and it categorizes the signs and symptoms associated with nervous system involvement. Major symptoms of central nervous system lupus include central nervous system vasculitis, cognitive dysfunction, lupus headache, the antiphospholipid syndrome, organic brain syndrome, and fibromyalgia. The pamphlet highlights central nervous system symptoms resulting from medications used to treat SLE, uncommon causes of central nervous
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system symptoms in SLE, and symptoms of peripheral nervous system lupus. It explains how a doctor evaluates and treats nervous system symptoms. The pamphlet also provides information on the Lupus Foundation of America. ·
Lupus and Infections and Immunizations Source: Rockville, MD: Lupus Foundation of America, Inc. 1997. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus discusses the relationship of lupus to infections and immunizations. Lupus patients are more susceptible to infection than most other people because they have abnormalities in their immune systems that predispose them to develop infections. In addition, many of the drugs used to treat lupus, including cortisone-like drugs and cytotoxic drugs, suppress the function of the immune system. The pamphlet identifies types of infection in systemic lupus erythematosus (SLE), including infections caused by organisms that can induce infection in people with lupus and in the general population and infections caused by organisms capable of inducing disease when one's immune system is weakened. The most common infections among lupus patients are respiratory tract, skin, and urinary tract infections. Other topics include the clinical evaluation of possible infection through symptom evaluation and laboratory tests, the treatment and prevention of infection, and the possible adverse reactions of people with lupus to allergy shots and tetanus or flu vaccines. The pamphlet also provides information on the Lupus Foundation of America.
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Photosensitivity and Lupus Erythematosus Source: Rockville, MD: Lupus Foundation of America, Inc. 1997. 6 p. Contact: Available from Lupus Foundation of America, Inc. 1300 Piccard Drive, Suite 200, Rockville, MD 20850-4303. (800) 558-0121 or (301) 6709292. Website: www.lupus.org/lupus. Price: Available as part of a package of 21 different lupus-related brochures for $3.95 plus shipping and handling. Summary: This pamphlet for people with lupus erythematosus (LE) discusses the relationship between LE and photosensitivity. Excessive sun exposure may trigger the onset of LE, may cause flares in people who have systemic lupus, and may aggravate cutaneous lupus. The pamphlet
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offers a possible explanation of how ultraviolet light (UV) aggravates lupus. It identifies factors that contribute to photosensitivity reactions, including skin type, time of day, altitude, proximity to the equator, reflective surfaces, and certain medications. The pamphlet presents forms of photoprotection, including wearing clothing made of tightly woven fabric and using sunblocks or sunscreens. In addition, it explains how sunscreens work, provides guidelines for purchasing a sunscreen, and highlights the side effects of sunscreens. The pamphlet concludes with information on the Lupus Foundation of America.
The NLM Gateway30 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM's information resources or databases.31 One target audience for the Gateway is the Internet user who is new to NLM's online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.32 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “lupus” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category.
Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 32 Other users may find the Gateway useful for an overall search of NLM's information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 30 31
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Results Summary Category Items Found Journal Articles 345134 Books / Periodicals / Audio Visual 2567 Consumer Health 293 Meeting Abstracts 3093 Other Collections 100 Total 351187
HSTAT33 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.34 HSTAT's audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ's Put Prevention Into Practice.35 Simply search by “lupus” (or synonyms) at the following Web site: http://text.nlm.nih.gov. Coffee Break: Tutorials for Biologists36 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. The HSTAT URL is http://hstat.nlm.nih.gov/. 35 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration's Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force's Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 36 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 33 34
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recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.37 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.38 This site has new articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/.
Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: ·
CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/.
·
Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center's MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html.
·
Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/.
·
MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html.
·
Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see http://www.lexical.com/Metaphrase.html.
The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 38 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process. 37
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The Genome Project and Lupus With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to lupus. In the following section, we will discuss databases and references used by physicians and scientists who work in this area.
Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).39 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI's Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “lupus” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for lupus: ·
Lupus Erythematosus, Systemic Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?152700
·
Systemic Lupus Erythematosus, Susceptibility To, 1 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?601744
Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease.
39
Physician Guidelines and Databases 239
·
Systemic Lupus Erythematosus, Susceptibility To, 2 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?605218
·
Systemic Lupus Erythematosus, Susceptibility To, 3 Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?605480
·
Systemic Lupus Erythematosus, Vitiligo-related Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?606579
Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body associated with it. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: ·
Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html
·
Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich's ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html
·
Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html
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Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: ·
PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed
·
Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide
·
Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein
·
Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure
·
Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome
·
PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset
·
OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
·
Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy
·
Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books
·
ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo
·
NCBI's Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/
To access the Entrez system at the National Center for Biotechnology Information, go to http://www.ncbi.nlm.nih.gov/entrez/, and then select the database that you would like to search. The databases available are listed in
Physician Guidelines and Databases 241
the drop box next to “Search.” In the box next to “for,” enter “lupus” (or synonyms) and click “Go.”
Jablonski's Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database40 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html you can also search across syndromes using an alphabetical index. You can also search at http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database41 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB's mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “lupus” (or synonyms) into the search box, and review the results. If more Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 41 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 40
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than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to non-professionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals.
Specialized References The following books are specialized references written for professionals interested in lupus (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · Atlas of Rheumatology by Gene G. Hunder (Editor); Hardcover, 2nd edition (June 2001), Current Medicine; ISBN: 1573401714; http://www.amazon.com/exec/obidos/ASIN/1573401714/icongroupinterna · Clinical Problems in Rheumatology by Dudley; Paperback, 3rd edition (May 2001), Dunitz Martin Ltd; ISBN: 1853175722; http://www.amazon.com/exec/obidos/ASIN/1853175722/icongroupinterna · Diagnosis and Treatment of Movement Impairment Syndromes by Shirley Sahrmann; Hardcover - 384 pages, 1st edition (September 4, 2001), Mosby, Inc.; ISBN: 0801672058; http://www.amazon.com/exec/obidos/ASIN/0801672058/icongroupinterna · Diagnosis of Bone and Joint Disorders (5-Volume Set) by Donald Resnick; Hardcover - 5472 pages, 4th edition (March 8, 2002); W B Saunders Co.; ISBN: 0721689213; http://www.amazon.com/exec/obidos/ASIN/0721689213/icongroupinterna · Kelley's Textbook of Rheumatology (2-Volume Set) by Shaun Ruddy (Editor), et al; Hardcover - 1788 pages, 6th edition (January 15, 2001), W B Saunders Co.; ISBN: 0721680089; http://www.amazon.com/exec/obidos/ASIN/0721680089/icongroupinterna · Kelley's Textbook of Rheumatology CD-ROM by Shaun Ruddy (Editor), et al; 6th edition (July 15, 2001), W B Saunders Co.; ISBN: 0721690327; http://www.amazon.com/exec/obidos/ASIN/0721690327/icongroupinterna · Mechanical Loading of Bones and Joints by Hideaki Takahashi (Editor); Hardcover - 324 pages, 1st edition (July 15, 1999), Springer Verlag; ISBN: 4431702423; http://www.amazon.com/exec/obidos/ASIN/4431702423/icongroupinterna · Modern Therapeutics in Rheumatic Diseases by George C. Tsokos (Editor), Steffen Gay (Editor); Hardcover - 655 pages, 1st edition (January
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15, 2002), Humana Press; ISBN: 0896039161; http://www.amazon.com/exec/obidos/ASIN/0896039161/icongroupinterna · Oxford Handbook of Rheumatology by Alan Hakim (Editor), Gavin Clunie (Editor); Paperback, 1st edition (March 15, 2002); Oxford University Press; ISBN: 0192630547; http://www.amazon.com/exec/obidos/ASIN/0192630547/icongroupinterna · Pathology and Pathobiology of Rheumatic Diseases by H. G. Fassbender; Hardcover (September 2001), Springer Verlag; ISBN: 3540629424; http://www.amazon.com/exec/obidos/ASIN/3540629424/icongroupint erna · Rehabilitation Techniques in Rheumatology by Clarke; Hardcover, 2nd edition (March 15, 2001), Dunitz Martin Ltd.; ISBN: 1853171204; http://www.amazon.com/exec/obidos/ASIN/1853171204/icongroupinterna · Rheumatology Secrets by Sterling G. West, M.D.; Paperback, 2nd edition (February 15, 2002), Lippincott, Williams & Wilkins Publishers; ISBN: 1560534745; http://www.amazon.com/exec/obidos/ASIN/1560534745/icongroupinterna · Treatment of the Rheumatic Diseases: Companion to Kelley's Textbook of Rheumatology by Michael H. Weisman, et al; Hardcover - 563 pages, 2nd edition (January 15, 2001), W B Saunders Co.; ISBN: 0721684645; http://www.amazon.com/exec/obidos/ASIN/0721684645/icongroupinterna
Vocabulary Builder Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Prophylaxis: The prevention of disease; preventive treatment. [EU] Reflective: Capable of throwing back light, images, sound waves : reflecting. [EU] Sorbitol: A polyhydric alcohol with about half the sweetness of sucrose. Sorbitol occurs naturally and is also produced synthetically from glucose. It was formerly used as a diuretic and may still be used as a laxative and in irrigating solutions for some surgical procedures. It is also used in many
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manufacturing processes, as a pharmaceutical aid, and in several research applications. [NIH] Tetanus: A disease caused by tetanospasmin, a powerful protein toxin produced by clostridium tetani. Tetanus usually occurs after an acute injury, such as a puncture wound or laceration. Generalized tetanus, the most common form, is characterized by tetanic muscular contractions and hyperreflexia. Localized tetanus presents itself as a mild condition with manifestations restricted to muscles near the wound. It may progress to the generalized form. [NIH] Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU] Vitiligo: A disorder consisting of areas of macular depigmentation, commonly on extensor aspects of extremities, on the face or neck, and in skin folds. Age of onset is often in young adulthood and the condition tends to progress gradually with lesions enlarging and extending until a quiescent state is reached. [NIH]
Dissertations 245
CHAPTER 10. DISSERTATIONS ON LUPUS Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master's dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to lupus. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations.
Dissertations on Lupus ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to lupus. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with lupus: ·
A Pilot Study of a Translated, Culturally Sensitive Systemic Lupus Erythematosus Self-help Course for Latino Lupus Patients (spanish Text) by Robbins, Laura, Dsn from City University of New York, 1994, 380 pages http://wwwlib.umi.com/dissertations/fullcit/9432374
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·
A Study of Lifelong Transitions, Experiential Learnings, and Coping Responses of Six Female Systemic Lupus Erythematosus Patients between the Ages of 20 and 51 Years (chronic Illness) by Scott, James Joseph, Phd from Michigan State University, 1991, 213 pages http://wwwlib.umi.com/dissertations/fullcit/9216359
·
Aspects of the Early Social Development of Timber Wolves (canis Lupus) by Mcleod, Peter John; Phd from Dalhousie University (canada), 1987 http://wwwlib.umi.com/dissertations/fullcit/NL40164
·
Behavioral Ecology of Sympatric Wolves, Canis Lupus, and Coyotes, C. Latrans, in Riding Mountain National Park, Manitoba by Paquet, Paul C; Phd from University of Alberta (canada), 1989 http://wwwlib.umi.com/dissertations/fullcit/NL52928
·
Cellular Interactions in a Peptide-induced Model of Systemic Lupus Erythematosus by Khalil, Magi Magdi; Phd from Yeshiva University, 2001, 172 pages http://wwwlib.umi.com/dissertations/fullcit/3027417
·
Characterization of the Reactivities of Sle and Normal-derived Human Hybridoma Lupus Anticoagulant, Anti-phospholipid and Anti-ddna Autoantibodies with Platelets and Endothelial Cells by Meng, Qianghua; Phd from Mcgill University (canada), 1989 http://wwwlib.umi.com/dissertations/fullcit/NL57155
·
Chronic Illness in Context: Examining Sociocultural Factors in Women's Experience of Lupus by Zeddies, Andrea Mcbride; Phd from The University of Texas at Austin, 2001, 174 pages http://wwwlib.umi.com/dissertations/fullcit/3037033
·
Early Onset of Lupus Symptoms and the Development of Crossreactive Immunoglobulin in Response to Inoculations with Cyanobacterial Extracts and Human (hela) Nuclear Extracts in Lupusprone Mrl/lpr Mice by Fiorentino, Christy Joan; Ms from California State University, Fresno, 2001, 44 pages http://wwwlib.umi.com/dissertations/fullcit/1406674
·
Etiological Factors in the Development of Depression in Systemic Lupus Erythematosus by Klopchin, Hope A.; Phd from State University of New York at Buffalo, 2001, 114 pages http://wwwlib.umi.com/dissertations/fullcit/3021907
·
Factors That Modify Penicillamine-induced Lupus in Brown Norway Rats: a Model of Idiosyncratic Drug Reactions by Sayeh, Ebrahim; Phd from University of Toronto (canada), 2001, 133 pages http://wwwlib.umi.com/dissertations/fullcit/NQ63750
Dissertations 247
Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to lupus is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public.
249
PART III. APPENDICES
ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with lupus and related conditions.
Researching Your Medications 251
APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with lupus. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internet-based databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for lupus. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of lupus. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-touse public sources.
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Your Medications: The Basics42 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of lupus. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with lupus take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid problems later. Here are some points to cover each time a new medicine is prescribed: ·
Ask about all parts of your treatment, including diet changes, exercise, and medicines.
·
Ask about the risks and benefits of each medicine or other treatment you might receive.
·
Ask how often you or your doctor will check for side effects from a given medication.
Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for lupus. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: ·
The name of the medicine and what it is supposed to do.
·
How and when to take the medicine, how much to take, and for how long.
·
What food, drinks, other medicines, or activities you should avoid while taking the medicine.
·
What side effects the medicine may have, and what to do if they occur.
·
If you can get a refill, and how often.
42
This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm.
Researching Your Medications 253
·
About any terms or directions you do not understand.
·
What to do if you miss a dose.
·
If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions).
Do not forget to tell your doctor about all the medicines you are currently taking (not just those for lupus). This includes prescription medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: ·
Name of medicine
·
Reason taken
·
Dosage
·
Time(s) of day
Also include any over-the-counter medicines, such as: ·
Laxatives
·
Diet pills
·
Vitamins
·
Cold medicine
·
Aspirin or other pain, headache, or fever medicine
·
Cough medicine
·
Allergy relief medicine
·
Antacids
·
Sleeping pills
·
Others (include names)
Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for lupus. One such source is the
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United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration's (FDA) Drug Approvals database.43 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications you are taking. Therefore, we have compiled a list of medications associated with the treatment of lupus. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.). The following drugs have been mentioned in the Pharmacopeia and other sources as being potentially applicable to lupus: Azathioprine ·
Systemic - U.S. Brands: Imuran http://www.nlm.nih.gov/medlineplus/druginfo/azathioprinesys temic202077.html
Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm.
43
Researching Your Medications 255
Chloroquine ·
Systemic - U.S. Brands: Aralen http://www.nlm.nih.gov/medlineplus/druginfo/chloroquinesyst emic202133.html
Cyclophosphamide ·
Systemic - U.S. Brands: Cytoxan; Neosar http://www.nlm.nih.gov/medlineplus/druginfo/cyclophosphami desystemic202174.html
Hydroxychloroquine ·
Systemic - U.S. Brands: Plaquenil http://www.nlm.nih.gov/medlineplus/druginfo/hydroxychloroq uinesystemic202288.html
Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor's office.
Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. The following medications are listed in the Reuters' database as associated with lupus (including those with contraindications):44 ·
Atenolol Chlorthalidone http://www.reutershealth.com/atoz/html/Atenolol_Chlorthalidone.htm
·
Betamethasone http://www.reutershealth.com/atoz/html/Betamethasone.htm
·
Bumetanide http://www.reutershealth.com/atoz/html/Bumetanide.htm
·
Carbamazepine http://www.reutershealth.com/atoz/html/Carbamazepine.htm
44
Adapted from A to Z Drug Facts by Facts and Comparisons.
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·
Chloroquine http://www.reutershealth.com/atoz/html/Chloroquine.htm
·
Cortisone http://www.reutershealth.com/atoz/html/Cortisone.htm
·
Cortisone (Cortisone Acetate) http://www.reutershealth.com/atoz/html/Cortisone_(Cortisone_Acetat e).htm
·
Danazol http://www.reutershealth.com/atoz/html/Danazol.htm
·
Dexamethasone http://www.reutershealth.com/atoz/html/Dexamethasone.htm
·
Enalapril Maleate Hydrochlorothiazide http://www.reutershealth.com/atoz/html/Enalapril_Maleate_Hydroch lorothiazide.htm
·
Erythromycin Ethylsuccinate Sulfisoxazole http://www.reutershealth.com/atoz/html/Erythromycin_Ethylsuccinat e_Sulfisoxazole.htm
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Esmolol HCl http://www.reutershealth.com/atoz/html/Esmolol_HCl.htm
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Ethacrynic Acid http://www.reutershealth.com/atoz/html/Ethacrynic_Acid.htm
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Ethacrynic Acid (Ethacrynate) http://www.reutershealth.com/atoz/html/Ethacrynic_Acid_(Ethacryna te).htm
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Ethosuximide http://www.reutershealth.com/atoz/html/Ethosuximide.htm
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Furosemide http://www.reutershealth.com/atoz/html/Furosemide.htm
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Gold Sodium Thiomalate http://www.reutershealth.com/atoz/html/Gold_Sodium_Thiomalate.h tm
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Griseofulvin http://www.reutershealth.com/atoz/html/Griseofulvin.htm
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Hydralazine HCI http://www.reutershealth.com/atoz/html/Hydralazine_HCI.htm
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Hydrochlorothiazide(HCTZ) http://www.reutershealth.com/atoz/html/Hydrochlorothiazide(HCTZ) .htm
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Hydrocortisone (Cortisol) http://www.reutershealth.com/atoz/html/Hydrocortisone_(Cortisol).htm
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Hydroxychloroquine Sulfate http://www.reutershealth.com/atoz/html/Hydroxychloroquine_Sulfat e.htm
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Indapamide http://www.reutershealth.com/atoz/html/Indapamide.htm
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Infliximab http://www.reutershealth.com/atoz/html/Infliximab.htm
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Isoniazid (Isonicotinic Acid Hydrazide; INH) http://www.reutershealth.com/atoz/html/Isoniazid_(Isonicotinic_Acid _Hydrazide;_INH).htm
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Labetalol HCL http://www.reutershealth.com/atoz/html/Labetalol_HCL.htm
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Lovastatin http://www.reutershealth.com/atoz/html/Lovastatin.htm
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Methimazole http://www.reutershealth.com/atoz/html/Methimazole.htm
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Methyldopa and Methyldopate HCl http://www.reutershealth.com/atoz/html/Methyldopa_and_Methyldo pate_HCl.htm
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Methylprednisolone http://www.reutershealth.com/atoz/html/Methylprednisolone.htm
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Metolazone http://www.reutershealth.com/atoz/html/Metolazone.htm
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Metoprolol http://www.reutershealth.com/atoz/html/Metoprolol.htm
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Phenytoin http://www.reutershealth.com/atoz/html/Phenytoin.htm
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Pravastatin Sodium http://www.reutershealth.com/atoz/html/Pravastatin_Sodium.htm
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Prednisolone http://www.reutershealth.com/atoz/html/Prednisolone.htm
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Prednisone http://www.reutershealth.com/atoz/html/Prednisone.htm
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Primaquine Phosphate http://www.reutershealth.com/atoz/html/Primaquine_Phosphate.htm
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Procainamide HCl http://www.reutershealth.com/atoz/html/Procainamide_HCl.htm
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Propranolol HCl http://www.reutershealth.com/atoz/html/Propranolol_HCl.htm
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Propylthiouracil http://www.reutershealth.com/atoz/html/Propylthiouracil.htm
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Quinidine http://www.reutershealth.com/atoz/html/Quinidine.htm
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Simvastatin http://www.reutershealth.com/atoz/html/Simvastatin.htm
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Sulfasalazine http://www.reutershealth.com/atoz/html/Sulfasalazine.htm
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Sulfisoxazole http://www.reutershealth.com/atoz/html/Sulfisoxazole.htm
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Ticlopidine HCl http://www.reutershealth.com/atoz/html/Ticlopidine_HCl.htm
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Tocainide HCl http://www.reutershealth.com/atoz/html/Tocainide_HCl.htm
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Torsemide http://www.reutershealth.com/atoz/html/Torsemide.htm
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Triamcinolone http://www.reutershealth.com/atoz/html/Triamcinolone.htm
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Trimethoprim Sulfamethoxazole http://www.reutershealth.com/atoz/html/Trimethoprim_Sulfamethox azole.htm
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Valproic Acid and Derivatives http://www.reutershealth.com/atoz/html/Valproic_Acid_and_Derivati ves.htm
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Mosby's GenRx Mosby's GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html.
Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm. Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/.
Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with lupus--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat lupus or potentially create deleterious side effects in patients with lupus. You should ask your physician about any contraindications, especially as these might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause
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unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it's especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions.
A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with lupus. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with lupus. The FDA warns patients to watch out for45: ·
Secret formulas (real scientists share what they know)
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Amazing breakthroughs or miracle cures (real breakthroughs don't happen very often; when they do, real scientists do not call them amazing or miracles)
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Quick, painless, or guaranteed cures
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If it sounds too good to be true, it probably isn't true.
This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html.
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If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov.
General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Complete Guide to Prescription and Nonprescription Drugs 2001 (Complete Guide to Prescription and Nonprescription Drugs, 2001) by H. Winter Griffith, Paperback 16th edition (2001), Medical Surveillance; ISBN: 0942447417; http://www.amazon.com/exec/obidos/ASIN/039952634X/icongroupinterna
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The Essential Guide to Prescription Drugs, 2001 by James J. Rybacki, James W. Long; Paperback - 1274 pages (2001), Harper Resource; ISBN: 0060958162; http://www.amazon.com/exec/obidos/ASIN/0060958162/icongroupinterna
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Handbook of Commonly Prescribed Drugs by G. John Digregorio, Edward J. Barbieri; Paperback 16th edition (2001), Medical Surveillance; ISBN: 0942447417; http://www.amazon.com/exec/obidos/ASIN/0942447417/icongroupinterna
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Johns Hopkins Complete Home Encyclopedia of Drugs 2nd ed. by Simeon Margolis (Ed.), Johns Hopkins; Hardcover - 835 pages (2000), Rebus; ISBN: 0929661583; http://www.amazon.com/exec/obidos/ASIN/0929661583/icongroupinterna
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Medical Pocket Reference: Drugs 2002 by Springhouse Paperback 1st edition (2001), Lippincott Williams & Wilkins Publishers; ISBN: 1582550964; http://www.amazon.com/exec/obidos/ASIN/1582550964/icongroupinterna
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PDR by Medical Economics Staff, Medical Economics Staff Hardcover 3506 pages 55th edition (2000), Medical Economics Company; ISBN: 1563633752; http://www.amazon.com/exec/obidos/ASIN/1563633752/icongroupinterna
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Pharmacy Simplified: A Glossary of Terms by James Grogan; Paperback 432 pages, 1st edition (2001), Delmar Publishers; ISBN: 0766828581; http://www.amazon.com/exec/obidos/ASIN/0766828581/icongroupinterna
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Physician Federal Desk Reference by Christine B. Fraizer; Paperback 2nd edition (2001), Medicode Inc; ISBN: 1563373971; http://www.amazon.com/exec/obidos/ASIN/1563373971/icongroupinterna
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Physician's Desk Reference Supplements Paperback - 300 pages, 53 edition (1999), ISBN: 1563632950; http://www.amazon.com/exec/obidos/ASIN/1563632950/icongroupinterna
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Bumetanide: A sulfamyl diuretic. [NIH] Carbamazepine: An anticonvulsant used to control grand mal and psychomotor or focal seizures. Its mode of action is not fully understood, but some of its actions resemble those of phenytoin; although there is little chemical resemblance between the two compounds, their three-dimensional structure is similar. [NIH] Danazol: A synthetic steroid with antigonadotropic and anti-estrogenic activities that acts as an anterior pituitary suppressant by inhibiting the pituitary output of gonadotropins. It possesses some androgenic properties. Danazol has been used in the treatment of endometriosis and some benign breast disorders. [NIH] Ethacrynic Acid: A compound that inhibits symport of sodium, potassium, and chloride primarily in the ascending limb of Henle, but also in the proximal and distal tubules. This pharmacological action results in excretion of these ions, increased urinary output, and reduction in extracelluar fluid. This compound has been classified as a loop or high ceiling diuretic. [NIH] Ethosuximide: An anticonvulsant especially useful in the treatment of absence seizures unaccompanied by other types of seizures. [NIH] Furosemide: A sulfamyl saluretic and diuretic. It has a fast onset and short duration of action and is used in edema and chronic renal insufficiency. [NIH] Gold Sodium Thiomalate: A variable mixture of the mono- and disodium salts of gold thiomalic acid used mainly for its anti-inflammatory action in the treatment of rheumatoid arthritis. It is most effective in active progressive rheumatoid arthritis and of little or no value in the presence of extensive deformities or in the treatment of other forms of arthritis. [NIH] Griseofulvin: An antifungal antibiotic. Griseofulvin may be given by mouth in the treatment of tinea infections. [NIH]
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Indapamide: A sulfamyl diuretic with about 16x the effect of furosemide. It has also been shown to be an effective antihypertensive agent in the clinic. [NIH]
Metolazone: A potent, long acting diuretic useful in chronic renal disease. It also tends to lower blood pressure and increase potassium loss. [NIH] Metoprolol: Adrenergic beta-1-blocking agent with no stimulatory action. It is less bound to plasma albumin than alprenolol and may be useful in angina pectoris, hypertension, or cardiac arrhythmias. [NIH] Phenytoin: An anticonvulsant that is used in a wide variety of seizures. It is also an anti-arrhythmic and a muscle relaxant. The mechanism of therapeutic action is not clear, although several cellular actions have been described including effects on ion channels, active transport, and general membrane stabilization. The mechanism of its muscle relaxant effect appears to involve a reduction in the sensitivity of muscle spindles to stretch. Phenytoin has been proposed for several other therapeutic uses, but its use has been limited by its many adverse effects and interactions with other drugs. [NIH]
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APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to lupus. Finally, at the conclusion of this chapter, we will provide a list of readings on lupus from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine's (NCCAM) overview of complementary and alternative medicine.
What Is CAM?46 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 46
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is.
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treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture.
What Are the Domains of Alternative Medicine?47 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are
47
Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html.
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practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India's traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body's defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology.
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Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind's capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing.
Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine's use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases.
Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body's systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues.
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Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include Qi gong, Reiki and Therapeutic Touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient's recovery and that healing is promoted when the body's energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields.
Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.48
48
Adapted from http://www.4woman.gov/faq/alternative.htm.
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Is It Okay to Want Both Traditional and Alternative Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy.
Finding CAM References on Lupus Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for lupus. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required.
National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine's databases to allow patients to search for articles that specifically relate to lupus and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “lupus” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to lupus: ·
A case of lichen planus-lupus erythematosus overlap syndrome with eyelid involvement. Author(s): Tursen U, Oz O, Ikizoglu G, Kaya TI, Dusmez D. Source: Eur J Ophthalmol. 2002 May-June; 12(3): 244-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12113574&dopt=Abstract
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A medical record of systemic lupus erythematosus. Author(s): Zhang Y, Cui L, Yang X. Source: J Tradit Chin Med. 2001 September; 21(3): 189-92. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11789323&dopt=Abstract
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A multidimensional approach to pain relief: case report of a patient with Systemic Lupus Erythematosus. Author(s): Smith SJ, Balaban AB. Source: Int J Clin Exp Hypn. 1983 April; 31(2): 72-81. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6832860&dopt=Abstract
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A novel treatment for lupus nephritis: lignan precursor derived from flax. Author(s): Clark WF, Muir AD, Westcott ND, Parbtani A. Source: Lupus. 2000; 9(6): 429-36. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10981647&dopt=Abstract
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Abnormal prothrombin crossed-immunoelectrophoresis in patients with lupus inhibitors. Author(s): Edson JR, Vogt JM, Hasegawa DK. Source: Blood. 1984 October; 64(4): 807-16. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6434005&dopt=Abstract
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Acute leukemia with features of systemic lupus erythematosus. Author(s): Saulsbury FT, Sabio H, Conrad D, Kesler RW, Levien MG. Source: The Journal of Pediatrics. 1984 July; 105(1): 57-9. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6610737&dopt=Abstract
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Acute renal failure caused by 'cat's claw' herbal remedy in a patient with systemic lupus erythematosus. Author(s): Hilepo JN, Bellucci AG, Mossey RT.
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Source: Nephron. 1997; 77(3): 361. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9375835&dopt=Abstract ·
Adapting the systemic lupus erythematosus self-help (SLESH) course for Latino SLE patients. Author(s): Robbins L, Allegrante JP, Paget SA. Source: Arthritis Care and Research : the Official Journal of the Arthritis Health Professions Association. 1993 June; 6(2): 97-103. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8399433&dopt=Abstract
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All about lupus. Author(s): Brain E. Source: Nurs Stand. 1989 April 29; 3(31): 41. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2498711&dopt=Abstract
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Animal models of cutaneous lupus erythematosus and lupus erythematosus photosensitivity. Author(s): Furukawa F. Source: Lupus. 1997; 6(2): 193-202. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9061668&dopt=Abstract
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Anti-DNA antibodies in the urine of lupus nephritis patients. Author(s): Macanovic M, Hogarth MB, Lachmann PJ. Source: Nephrology, Dialysis, Transplantation : Official Publication of the European Dialysis and Transplant Association - European Renal Association. 1999 June; 14(6): 1418-24. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10383001&dopt=Abstract
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Association of complement C4 and HLA-DR alleles with systemic lupus erythematosus in Koreans. Author(s): Hong GH, Kim HY, Takeuchi F, Nakano K, Yamada H, Matsuta K, Han H, Tokunaga K, Ito K, Park KS. Source: J Rheumatol. 1994 March; 21(3): 442-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7911834&dopt=Abstract
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·
Auriculo-acupuncture in 15 cases of discoid lupus erythematosus. Author(s): Chen YS, Hu XE. Source: J Tradit Chin Med. 1985 December; 5(4): 261-2. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3834238&dopt=Abstract
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Autoimmune thrombocytopenia in pediatric systemic lupus erythematosus: alternative therapeutic modalities. Author(s): Lipnick RN, Tsokos GC, Bray GL, White PH. Source: Clin Exp Rheumatol. 1990 May-June; 8(3): 315-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1696192&dopt=Abstract
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Blast crisis of chronic myelogenous leukemia in long-lasting systemic lupus erythematosus: regression of both diseases after autologous bone marrow transplantation. Author(s): Meloni G, Capria S, Vignetti M, Mandelli F, Modena V. Source: Blood. 1997 June 15; 89(12): 4659. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9192793&dopt=Abstract
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Blood chemistry in deficiency of kidney-yin and deficiency of kidneyyang types of subacute systemic lupus erythematosus. Author(s): Zhang FS, Sun P. Source: J Tradit Chin Med. 1985 December; 5(4): 265-6. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3834240&dopt=Abstract
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Brainstem auditory evoked potentials with increased stimulus rate in patients suffering from systemic lupus erythematosus. Author(s): Fradis M, Podoshin L, Ben-David J, Statter P, Pratt H, Nahir M. Source: The Laryngoscope. 1989 March; 99(3): 325-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2918803&dopt=Abstract
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C1 subcomponent complexes and C2 cleavage in active systemic lupus erythematosus. Author(s): Jonsson H, Sjoholm AG, Martensson U, Laurell AB, Sturfelt G.
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Source: Complement Inflamm. 1991; 8(1): 1-12. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2049932&dopt=Abstract ·
C1q solid-phase radioimmunoassay: binding properties of solid-phase C1q and evidence that C1q-binding IgG complexes in systemic lupus erythematosus are not bound to endogenous C1q. Author(s): Uwatoko S, Aotsuka S, Okawa M, Egusa Y, Yokohari R, Aizawa C, Suzuki K. Source: Journal of Immunological Methods. 1984 October 12; 73(1): 67-74. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6436382&dopt=Abstract
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Chondritis in systemic lupus erythematosus: clinical and immunopathologic studies. Author(s): Kitridou RC, Wittmann AL, Quismorio FP Jr. Source: Clin Exp Rheumatol. 1987 October-December; 5(4): 349-53. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3440331&dopt=Abstract
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Chorea, eosinophilia, and lupus anticoagulant associated with acute lymphoblastic leukemia. Author(s): Schiff DE, Ortega JA. Source: Pediatric Neurology. 1992 November-December; 8(6): 466-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1476578&dopt=Abstract
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Chromium-51 ethylenediamine tetraacetic acid glomerular filtration rate: a better predictor than glomerular filtration rate calculated by the Cockcroft-Gault formula for renal involvement in systemic lupus erythematosus patients. Author(s): Godfrey T, Cuadrado MJ, Fofi C, Abbs I, Khamashta MA, Nunan T, Hughes GR. Source: Rheumatology (Oxford, England). 2001 March; 40(3): 324-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11285381&dopt=Abstract
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Clinical observations on Tripterygium wilfordii in treatment of 26 cases of discoid lupus erythematosus. Author(s): Qin WZ, Zhu GD, Yang SM, Han KY, Wang J.
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Source: J Tradit Chin Med. 1983 June; 3(2): 131-2. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=6555446&dopt=Abstract ·
Clinical studies on the significance of DNA:anti-DNA complexes in the systemic circulation and cerebrospinal fluid (CSF) of patients with systemic lupus erythematosus. Author(s): Carr RI, Harbeck RJ, Hoffman AA, Pirofsky B, Bardana EJ. Source: J Rheumatol. 1975 June; 2(2): 184-93. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=807729&dopt=Abstract
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Clinical trials in lupus nephritis. Author(s): Ginzler EM. Source: Curr Rheumatol Rep. 2001 June; 3(3): 199-204. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11352788&dopt=Abstract
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Complement fixing immune complexes containing antinuclear antibodies in patients with systemic lupus erythematosus. Author(s): Budd JJ 3rd, Moore TL, Osborn TG. Source: J Rheumatol. 1988 February; 15(2): 247-50. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3258914&dopt=Abstract
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Complexes of serum amyloid P component and DNA in serum from healthy individuals and systemic lupus erythematosus patients. Author(s): Sorensen IJ, Holm Nielsen E, Schroder L, Voss A, Horvath L, Svehag SE. Source: Journal of Clinical Immunology. 2000 November; 20(6): 408-15. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11202230&dopt=Abstract
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Daily psychosocial stressors interfere with the dynamics of urine neopterin in a patient with systemic lupus erythematosus: an integrative single-case study. Author(s): Schubert C, Lampe A, Rumpold G, Fuchs D, Konig P, Chamson E, Schussler G.
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Source: Psychosomatic Medicine. 1999 November-December; 61(6): 87682. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10593641&dopt=Abstract ·
Decreased bone mineral density in female patients with systemic lupus erythematosus after long-term administration of Tripterygium Wilfordii Hook. F. Author(s): Huang L, Feng S, Wang H. Source: Chin Med J (Engl). 2000 February; 113(2): 159-61. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11775543&dopt=Abstract
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Decreased pro-inflammatory cytokines and increased antioxidant enzyme gene expression by omega-3 lipids in murine lupus nephritis. Author(s): Chandrasekar B, Fernandes G. Source: Biochemical and Biophysical Research Communications. 1994 April 29; 200(2): 893-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8179624&dopt=Abstract
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Detection of immune complexes in unheated sera by modified 125I-Clq binding test. Effect of heating on the binding of Clq by immune complexes and application of the test to systemic lupus erythematosus. Author(s): Zubler RH, Lange G, Lambert PH, Miescher PA. Source: Journal of Immunology (Baltimore, Md. : 1950). 1976 January; 116(1): 232-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1245740&dopt=Abstract
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Diet and systemic lupus erythematosus: from mouse and monkey to woman? Author(s): Petri M. Source: Lupus. 2001; 10(11): 775-7. Review. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11789485&dopt=Abstract
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Effect of acetylsalicylic acid on renal function in systemic lupus erythematosus. Author(s): Rasmussen S, Petersen J, Nielsen IL, Christensen P, Hilden T.
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Source: European Journal of Clinical Pharmacology. 1982; 23(6): 505-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7160418&dopt=Abstract ·
Effect of vegetarian diet on systemic lupus erythematosus. Author(s): Shigemasa C, Tanaka T, Mashiba H. Source: Lancet. 1992 May 9; 339(8802): 1177. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1349403&dopt=Abstract
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Evaluation of the Japanese-Chinese herbal medicine, kampo, for the treatment of lupus dermatoses in autoimmune prone MRL/Mp-lpr/lpr mice. Author(s): Kanauchi H, Imamura S, Takigawa M, Furukawa F. Source: J Dermatol. 1994 December; 21(12): 935-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=7868765&dopt=Abstract
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Filtration fraction: an index of renal disease activity in patients with systemic lupus erythematosus. Author(s): Favre H, Miescher PA. Source: Proc Eur Dial Transplant Assoc Eur Ren Assoc. 1985; 21: 717-21. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3991566&dopt=Abstract
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Flaxseed in lupus nephritis: a two-year nonplacebo-controlled crossover study. Author(s): Clark WF, Kortas C, Heidenheim AP, Garland J, Spanner E, Parbtani A. Source: Journal of the American College of Nutrition. 2001 April; 20(2 Suppl): 143-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11349937&dopt=Abstract
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Hysterical contracture complicating hemiplegia in a patient with systemic lupus erythematosus, activated in pregnancy. Author(s): Pryse-Phillips W, Yorkston NJ. Source: Guys Hosp Rep. 1965; 114(3): 239-47. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=5837862&dopt=Abstract
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Improved survival in murine lupus as the result of selenium supplementation. Author(s): O'Dell JR, McGivern JP, Kay HD, Klassen LW. Source: Clinical and Experimental Immunology. 1988 August; 73(2): 3227. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3263235&dopt=Abstract
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Improving lupus knowledge. Author(s): Rossiter R. Source: Australian Nursing Journal (July 1993). 2001 September; 9(3): 39. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11908120&dopt=Abstract
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Insecticide-induced lupus erythematosus. Author(s): Curtis CF. Source: International Journal of Dermatology. 1996 January; 35(1): 74-5. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=8838938&dopt=Abstract
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Intestinal permeability test in systemic lupus erythematosus. Author(s): Wang SJ, Kao CH, Chen DU, Lan JL. Source: Zhonghua Yi Xue Za Zhi (Taipei). 1992 January; 49(1): 29-33. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=1312382&dopt=Abstract
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Lupus clients assisting one another: a model for supportive services. Author(s): Kroll CJ. Source: Rehabil Nurs. 1987 September-October; 12(5): 239-41. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=3671868&dopt=Abstract
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Lupus erythematosus and nutrition: a review of the literature. Author(s): Brown AC. Source: J Ren Nutr. 2000 October; 10(4): 170-83. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11070144&dopt=Abstract
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Lupus erythematosus panniculitis in a patient with autoimmune hepatitis. Author(s): Fujiwara K, Kono T, Ishii M, Taniguchi S, Saito S. Source: Acta Dermato-Venereologica. 2000 September-October; 80(5): 373-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11200838&dopt=Abstract
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Lupus support and awareness in the Republic of Ireland. Author(s): Corcoran D, Wall JG. Source: Ir Med J. 2000 March-April; 93(2): 54-5. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11037252&dopt=Abstract
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Measurement of deoxyribonuclease I (DNase) in the serum and urine of systemic lupus erythematosus (SLE)-prone NZB/NZW mice by a new radial enzyme diffusion assay. Author(s): Macanovic M, Lachmann PJ. Source: Clinical and Experimental Immunology. 1997 May; 108(2): 220-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9158089&dopt=Abstract
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Natural medicine and nutritional therapy as an alternative treatment in systemic lupus erythematosus. Author(s): Patavino T, Brady DM. Source: Alternative Medicine Review : a Journal of Clinical Therapeutic. 2001 October; 6(5): 460-71. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11703166&dopt=Abstract
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Omega-3 fatty acid dietary supplementation in systemic lupus erythematosus. Author(s): Clark WF, Parbtani A, Huff MW, Reid B, Holub BJ, Falardeau P. Source: Kidney International. 1989 October; 36(4): 653-60. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=2811063&dopt=Abstract
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Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: ·
Alternative Medicine Foundation, Inc.: http://www.herbmed.org/
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AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats
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Chinese Medicine: http://www.newcenturynutrition.com/
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drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html
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Family Village: http://www.familyvillage.wisc.edu/med_altn.htm
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Google: http://directory.google.com/Top/Health/Alternative/
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Healthnotes: http://www.thedacare.org/healthnotes/
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Open Directory Project: http://dmoz.org/Health/Alternative/
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TPN.com: http://www.tnp.com/
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Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/
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WebMDÒHealth: http://my.webmd.com/drugs_and_herbs
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WellNet: http://www.wellnet.ca/herbsa-c.htm
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WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to lupus; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: ·
General Overview Allergic Reaction, Angioedema Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ang ioedemacc.html
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Angioedema Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ang ioedemacc.html Cholesterol, High Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp ercholesterolemiacc.html Colds and Flus Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000282.html Depression Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Dep ressioncc.html Erythema Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Skin DisordersErythemacc.html High Cholesterol Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp ercholesterolemiacc.html
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Hypercholesterolemia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp ercholesterolemiacc.html Indigestion, Heartburn, and Low Stomach Acidity Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Indigestion.htm Lupus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Syst emicLupusErythematosuscc.html Pancreatic Insufficiency Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Pancreatic_Insuffi ciency.htm Photodermatitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Skin DisordersPhotodermatitiscc.html Photosensitivity Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Photosensitivity.htm Raynaud's Phenomenon Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ray naudsPhenomenoncc.html
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Rheumatoid Arthritis Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000265.html Scleroderma Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Scle rodermacc.html Skin Disorders, Erythema Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Skin DisordersErythemacc.html Skin Disorders, Photodermatitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Skin DisordersPhotodermatitiscc.html Sunburn Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Skin DisordersPhotodermatitiscc.html Systemic Lupus Erythematosus Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Lupus.htm Systemic Lupus Erythematosus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Syst emicLupusErythematosuscc.html
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Systemic lupus erythematosus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsLookups/Uses/ systemiclupuserythematosus.html ·
Alternative Therapy Chelation Therapy Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Therapy/Chelation_Therap y.htm Myotherapy Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 931,00.html
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Herbs and Supplements Aesculus Alternative names: Horse Chestnut; Aesculus hippocastanum L. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ ALA Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Al phaLinolenicAcidALAcs.html Alfalfa Alternative names: Medicago sativa Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Alfalfa.htm
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Alpha-Linolenic Acid (ALA) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Al phaLinolenicAcidALAcs.html Androstenedione Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Androstenedione.htm Astragalus Alternative names: Astragalus membranaceus Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Astragalus.htm Astragalus mem Alternative names: Huang-Qi; Astragalus membranaceus Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Beta-carotene Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10103,00.html Bromelain Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 760,00.html Corticosteroids Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000336.html
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Dehydroepiandrosterone (DHEA) Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/DHEA.htm Dehydroepiandrosterone (DHEA) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/D ehydroepiandrosteroneDHEAcs.html DHEA Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/D ehydroepiandrosteroneDHEAcs.html DHEA Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10022,00.html DHEA (Dehydroepiandrosterone) Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000146.html Docosahexaenoic Acid Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/DHA.htm Echinacea Alternative names: Echinacea purpurea, Echinacea angustifolia, Echinacea pallida Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Echinacea.htm Echinacea Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000149.html
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Echinacea Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 775,00.html EDTA Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Et hylenediaminetetraaceticAcidEDTAcs.html Ethylenediaminetetraacetic Acid (EDTA) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Et hylenediaminetetraaceticAcidEDTAcs.html Flaxseed Alternative names: Linum usitatissimum, Linseed Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Flaxseed ch.html Grape seed extract Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 793,00.html Hydroxychloroquine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Hydroxychloroquine. htm
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Linseed Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Flaxseed ch.html Linum usitatissimum Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Flaxseed ch.html Melatonin Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Melatonin.htm Melatonin Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/M elatonincs.html MSM Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 807,00.html Oral Corticosteroids Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Corticosteroids_Oral. htm PABA Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/PABA.htm
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Pregnenolone Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Pregnenolone.htm Uncaria CatClaw Alternative names: Cat's Claw, Uno de Gato; Uncaria tomentosa (Willd.) D.C. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/
General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): ·
The Arthritis Bible: A Comprehensive Guide to Alternative Therapies and Conventional Treatments for Arthritic Diseases by Leonid Gordin, Craig Weatherby; Paperback - 244 pages, 1st edition (April 15, 1999), Inner Traditions Int’l Ltd.; ISBN: 0892818255; http://www.amazon.com/exec/obidos/ASIN/0892818255/icongroupin terna
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Healing Joint Pain Naturally : Safe and Effective Ways to Treat Arthritis, Fibromyalgia, and Other Joint Diseases by Ellen Hodgson Brown; Paperback - 262 pages (June 2001), Broadway Books; ISBN: 076790561X; http://www.amazon.com/exec/obidos/ASIN/076790561X/icongroupi nterna
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Healthy Bones & Joints: A Natural Approach to Treating Arthritis, Osteoporosis, Tendinitis, Myalgia & Bursitis by David Hoffmann; Paperback - 128 pages (July 15, 2000), Storey Books; ISBN: 1580172539; http://www.amazon.com/exec/obidos/ASIN/1580172539/icongroupin terna
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Joint Pains: A Guide to Successful Herbal Remedies by Penelope Ody; Paperback - 172 pages (April 2002), Souvenir Press Ltd; ISBN: 0285636227; http://www.amazon.com/exec/obidos/ASIN/0285636227/icongroupin terna
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The Posture Prescription : A Doctor's Rx for Eliminating Back, Muscle, and Joint Pain, Achieving Optimum Strength and Mobility, Living a Life of Fitne by Arthur White, MD, et al; Paperback - 256 pages, 1st edition (January 8, 2002), Three Rivers Pr; ISBN: 0609806319; http://www.amazon.com/exec/obidos/ASIN/0609806319/icongroupin terna
For additional information on complementary and alternative medicine, ask your doctor or write to: National Institutes of Health National Center for Complementary and Alternative Medicine Clearinghouse P. O. Box 8218 Silver Spring, MD 20907-8218
Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Acidity: L. aciditas) the quality of being acid or sour; containing acid (hydrogen ions). [EU] Androstenedione: A steroid with androgenic properties that is produced in the testis, ovary, and adrenal cortex. It is a precursor to testosterone and other androgenic hormones. [NIH] Angioedema: A vascular reaction involving the deep dermis or subcutaneous or submucal tissues, representing localized edema caused by dilatation and increased permeability of the capillaries, and characterized by development of giant wheals. [EU] Carotene: The general name for a group of pigments found in green, yellow, and leafy vegetables, and yellow fruits. The pigments are fat-soluble, unsaturated aliphatic hydrocarbons functioning as provitamins and are converted to vitamin A through enzymatic processes in the intestinal wall. [NIH]
Chelation: Combination with a metal in complexes in which the metal is
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part of a ring. [EU] Echinacea: A genus of perennial herbs used topically and internally. It contains echinacoside, glycosides, inulin, isobutyl amides, resin, and sesquiterpenes. [NIH] Mobility: Capability of movement, of being moved, or of flowing freely. [EU]
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APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with lupus. Any dietary recommendation is based on a patient's age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with lupus may be given different recommendations. Some recommendations may be directly related to lupus, while others may be more related to the patient's general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of lupus. We will then show you how to find studies dedicated specifically to nutrition and lupus.
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Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: ·
Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion.
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Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes.
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Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products.
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Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol.
Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: ·
Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe.
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Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains.
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Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from
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nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. ·
Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains
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Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish.
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Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat.
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Vitamin C allows the body's immune system to fight various diseases, strengthens body tissue, and improves the body's use of iron; food sources for vitamin C include a wide variety of fruits and vegetables.
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Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products.
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Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish.
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Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables.
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Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains.
It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: ·
Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products.
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Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat.
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·
Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste.
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Iodine helps regulate the body's use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat.
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Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables.
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Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood.
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Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products.
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Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products.
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Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts.
The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:49 ·
DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs.
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DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium.
49
Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html.
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·
RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.”
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RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?50
Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”51 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.52 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 51 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail:
[email protected]. 52 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 50
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the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail:
[email protected]
Finding Studies on Lupus The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.53 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture.
53
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periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “lupus” (or synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following is a typical result when searching for recently indexed consumer information on lupus: ·
Lupus and the heart-joint connection. Source: Anonymous Johns-Hopkins-Med-Lett-Health-After-50. April; 14(2): 4-5 1042-1882
2002
The following information is typical of that found when using the “Full IBIDS Database” when searching using “lupus” (or a synonym): ·
Anti-neutrophil cytoplasmic antibodies in 566 European patients with systemic lupus erythematosus: prevalence, clinical associations and correlation with other autoantibodies. European Concerted Action on the Immunogenetics of SLE. Author(s): Istituto di Reumatologia, Universita di Siena, Italy. Source: Galeazzi, M Morozzi, G Sebastiani, G D Bellisai, F Marcolongo, R Cervera, R De Ramon Garrido, E Fernandez Nebro, A Houssiau, F Jedryka Goral, A Mathieu, A Papasteriades, C Piette, J C Scorza, R Smolen, J Clin-Exp-Rheumatol. 1998 Sep-October; 16(5): 541-6 0392-856X
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Bromocriptine in systemic lupus erythematosus: a double-blind, randomized, placebo-controlled study. Author(s): Rheumatology Department, Centro Medico Nacional El Fenix, Merida, Yucatan, Mexico. Source: Alvarez Nemegyei, J Cobarrubias Cobos, A Escalante Triay, F Sosa Munoz, J Miranda, J M Jara, L J Lupus. 1998; 7(6): 414-9 0961-2033
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Dietary polyunsaturated fatty acids decrease anti-dsDNA and anticardiolipin antibodies production in idiotype induced mouse model of systemic lupus erythematosus. Author(s): School of Nutritional Sciences, The Faculty of Agriculture, The Hebrew University of Jerusalem, Israel. Source: Reifen, R Blank, M Afek, A Kopilowiz, Y Sklan, D Gershwin, M E German, B Yoshida, S Shoenfeld, Y Lupus. 1998; 7(3): 192-7 0961-2033
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·
Differential effects of captopril and enalapril, two angiotensin converting enzyme inhibitors, on immune reactivity in experimental lupus disease. Author(s): Department of Clinical Immunology, University of Goteborg, Sweden. Source: Tarkowski, A Carlsten, H Herlitz, H Westberg, G Agents-Actions. 1990 August; 31(1-2): 96-101 0065-4299
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Expression of CTLA-4 molecule in peripheral blood T lymphocytes from patients with systemic lupus erythematosus. Author(s): Department of Internal Medicine, College of Medicine, National Cheng Kung University, Tainan, Taiwan, R.O.C. Source: Liu, M F Liu, H S Wang, C R Lei, H Y J-Clin-Immunol. 1998 November; 18(6): 392-8 0271-9142
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Falsely elevated INRs in warfarin-treated patients with the lupus anticoagulant. Author(s): Medical Science Laboratories, Wauwatosa, WI, USA. Source: Sanfelippo, M J Sennet, J McMahon, E J WMJ. 2000 June; 99(3): 624, 43
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Free tissue transfer in patients with systemic lupus erythematosus. Author(s): Department of Plastic and Reconstructive Surgery, Kingston General Hospital, Hull, UK. Source: Raurell, A Austin, O M Ramakrishnan, V Br-J-Plast-Surg. 2000 January; 53(1): 77-9 0007-1226
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High levels of circulating early apoptic peripheral blood mononuclear cells in systemic lupus erythematosus. Author(s): Department of Rheumatology, Heinrich-Heine University, Dusseldorf, Germany. Source: Perniok, A Wedekind, F Herrmann, M Specker, C Schneider, M Lupus. 1998; 7(2): 113-8 0961-2033
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Improvement in lupus nephritis following treatment with a Chinese herbal preparation. Author(s): Department of Pediatrics, National University of Singapore, Singapore. Source: Yap, H K Ang, S G Lai, Y H Ramgolam, V Jordan, S C ArchPediatr-Adolesc-Med. 1999 August; 153(8): 850-2 1072-4710
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Inhibiting effect of charged polymers on interaction of human lupus autoantibodies with certain intracellular proteins. Author(s): Institute of Medical Radiology, Academy of Medical Sciences, Obninsk, USSR. Source: Kabakov, A E Brovkina, L N Poverenny, A M Cebecauer, L Rheumatol-Int. 1992; 11(6): 221-4 0172-8172
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Large subcutaneous calcification in systemic lupus erythematosus: treatment with oral aluminum hydroxide administration followed by surgical excision. Author(s): Department of Dermatology, College of Medicine, The Catholic University of Korea, Seoul. Source: Park, Y M Lee, S J Kang, H Cho, S H J-Korean-Med-Sci. 1999 October; 14(5): 589-92 1011-8934
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Management of lupus nephritis at the Kenyatta National Hospital. Author(s): Department of Medicine and Pathology, College of Health Sciences, University of Nairobi, Kenyatta National Hospital. Source: Otieno, L S McLigeyo, S O Kayima, J K Sitati, S East-Afr-Med-J. 1990 June; 67(6): 387-95 0012-835X
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Non-X-linked hyper-IgM syndrome with systemic lupus erythematosus. Author(s): First Department of Internal Medicine, Ehime University School of Medicine, Japan. Source: Arai, J Yasukawa, M Takada, K Tange, Y Saiki, O Horiuchi, T Tamai, T Fujita, S Clin-Exp-Rheumatol. 1998 Jan-February; 16(1): 84-6 0392-856X
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Parallelism of serum anti-F(ab')2 and anti-cationic IgG reactivities in patients with systemic lupus erythematosus. Author(s): Division of Rheumatology and Clinical Immunology, University of Florida, Gainesville 32610. Source: Silvestris, F Yancey, W B Malone, C Searles, R Dammacco, F Williams, R C Clin-Immunol-Immunopathol. 1991 May; 59(2): 256-70 0090-1229
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Prolactin modulates the disease activity of systemic lupus erythematosus accompanied by prolactinoma. Author(s): Third Department of Internal Medicine, Kinki University School of Medicine, Japan. Source: Funauchi, M Ikoma, S Enomoto, H Sugiyama, M Ohno, M Hamada, K Kanamaru, A Clin-Exp-Rheumatol. 1998 Jul-August; 16(4): 479-82 0392-856X
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Ratio of factor V activities in PT and APTT assays as a new diagnostic marker of lupus anticoagulant. Author(s): Department of Laboratory Medicine, Gunma University School of Medicine, Maebashi, Japan. Source: Amagai, H Kanda, T Shizuka, R Fukumura, Y Kobayashi, I ClinLab-Haematol. 1999 February; 21(1): 45-9 0141-9854
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Role of IL-10 in the abnormalities of early cell activation events of lymphocytes from patients with systemic lupus erythematosus. Author(s): Department of Immunology, Facultad de Medicina, UASLP, San Luis Potosi, S.L.P., Mexico.
[email protected] Source: Gonzalez Amaro, R Portales Perez, D Baranda, L Abud Mendoza, C Llorente, L Richaud Patin, Y Alcocer Varela, J Alarcon Segovia, D JAutoimmun. 1998 October; 11(5): 395-402 0896-8411
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Structure-function analysis of a lupus anti-DNA autoantibody: central role of the heavy chain complementarity-determining region 3 Arg in binding of double- and single-stranded DNA. Author(s): Department of Pathology, Weill Medical College of Cornell University, New York, NY 10021, USA. Source: Li, Z Schettino, E W Padlan, E A Ikematsu, H Casali, P Eur-JImmunol. 2000 July; 30(7): 2015-26 0014-2980
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Subclinical activation of lupus nephritis by recombinant human growth hormone. Author(s): Department of Pediatrics, National University of Singapore, Singapore. Source: Yap, H K Loke, K Y Murugasu, B Lee, B W Pediatr-Nephrol. 1998 February; 12(2): 133-5 0931-041X
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Successful treatment of lupus nephritis in MRL-lpr/lpr mice by inhibiting ornithine decarboxylase. Author(s): Clinical Research Center, University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, New Brunswick. Source: Gunnia, U B Amenta, P S Seibold, J R Thomas, T J Kidney-Int. 1991 May; 39(5): 882-90 0085-2538
Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: ·
healthfinder®, HHS's gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&page=0
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The United States Department of Agriculture's Web site dedicated to nutrition information: www.nutrition.gov
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The Food and Drug Administration's Web site for federal food safety information: www.foodsafety.gov
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The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/
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The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/
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Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/
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Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/
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Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/
Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: ·
AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats
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Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html
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Google: http://directory.google.com/Top/Health/Nutrition/
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Healthnotes: http://www.thedacare.org/healthnotes/
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Open Directory Project: http://dmoz.org/Health/Nutrition/
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Yahoo.com: http://dir.yahoo.com/Health/Nutrition/
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WebMDÒHealth: http://my.webmd.com/nutrition
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WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html
The following is a specific Web list relating to lupus; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation:
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·
Vitamins Pantothenic Acid Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_B5.htm Vitamin A Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000230.html Vitamin B complex Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 962,00.html Vitamin C Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 904,00.html Vitamin E Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Vitamin_E.htm Vitamin E Alternative names: Alpha-Tocopherol, Beta-Tocopherol, D-AlphaTocopherol, Delta-Tocopherol, Gamma-Tocopherol Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminEcs.html Vitamin E Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 906,00.html
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·
Minerals Alpha-Tocopherol Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminEcs.html Beta-Tocopherol Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminEcs.html D-Alpha-Tocopherol Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminEcs.html Delta-Tocopherol Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminEcs.html Gamma-Tocopherol Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminEcs.html Iron Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Iron.htm
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Magnesium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/M agnesiumcs.html Selenium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Se leniumcs.html Selenium Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10055,00.html Zinc Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Zi nccs.html Zinc Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/In teractions/Zinccs.html Zinc Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10071,00.html
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Zinc/copper Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 938,00.html ·
Food and Diet Flaxseeds Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Food_Guide/Flaxseeds.htm Omega-3 Fatty Acids Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/O mega3FattyAcidscs.html Omega-3 fatty acids Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 992,00.html
Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Aluminum: A metallic element that has the atomic number 13, atomic symbol Al, and atomic weight 26.98. [NIH] Calcification: The process by which organic tissue becomes hardened by a deposit of calcium salts within its substance. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named
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because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Immunogenetics: A branch of genetics which deals with the genetic basis of the immune response. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Ornithine: An amino acid produced in the urea cycle by the splitting off of urea from arginine. [NIH] Prolactin: Pituitary lactogenic hormone. A polypeptide hormone with a molecular weight of about 23,000. It is essential in the induction of lactation in mammals at parturition and is synergistic with estrogen. The hormone also brings about the release of progesterone from lutein cells, which renders the uterine mucosa suited for the embedding of the ovum should fertilization occur. [NIH] Prolactinoma: A pituitary adenoma which secretes prolactin, leading to hyperprolactinemia. Clinical manifestations include amenorrhea; galactorrhea; impotence; headache; visual disturbances; and cerebrospinal fluid rhinorrhea. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Warfarin: An anticoagulant that acts by inhibiting the synthesis of vitamin K-dependent coagulation factors. Warfarin is indicated for the prophylaxis and/or treatment of venous thrombosis and its extension, pulmonary embolism, and atrial fibrillation with embolization. It is also used as an adjunct in the prophylaxis of systemic embolism after myocardial infarction. Warfarin is also used as a rodenticide. [NIH]
Finding Medical Libraries 309
APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area.
Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM's interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.54
54
Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html.
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Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657.
Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):55 ·
Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/
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Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM
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Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm
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California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html
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California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html
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California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html
·
California: Gateway Health Library (Sutter Gould Medical Foundation)
·
California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/
55
Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html.
Finding Medical Libraries 311
·
California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp
·
California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html
·
California: San José PlaneTree Health Library, http://planetreesanjose.org/
·
California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html
·
California: University of California, Davis. Health Sciences Libraries
·
California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html
·
California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/
·
Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm
·
Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/
·
Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/
·
Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml
·
Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm
·
Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html
·
Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm
·
Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp
·
Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/
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·
Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm
·
Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html
·
Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/
·
Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm
·
Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/
·
Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/
·
Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/
·
Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm
·
Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html
·
Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm
·
Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/
·
Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library
·
Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10
·
Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html
·
Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html
·
Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml
Finding Medical Libraries 313
·
Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp
·
Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/
·
Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html
·
Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm
·
Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp
·
Massachusetts: St. Luke's Hospital Health Sciences Library (St. Luke's Hospital), http://www.southcoast.org/library/
·
Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html
·
Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/
·
Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm
·
Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/
·
Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html
·
Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm
·
Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html
·
Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41
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·
National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html
·
National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/
·
National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/
·
Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm
·
New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/
·
New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm
·
New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm
·
New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/
·
New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html
·
New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/
·
New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html
·
New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/
·
Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm
·
Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp
Finding Medical Libraries 315
·
Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/
·
Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/
·
Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml
·
Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html
·
Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html
·
Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml
·
Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp
·
Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm
·
Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/
·
South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm
·
Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/
·
Texas: Matustik Family Resource Center (Cook Children's Health Care System), http://www.cookchildrens.com/Matustik_Library.html
·
Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/
·
Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/
Your Rights and Insurance 317
APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with lupus faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.
Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.56 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: ·
Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information.
56Adapted
from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1.
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·
Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction.
·
Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints.
·
Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding.
Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: ·
Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers.
·
Women's health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women's healthcare services.
·
Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan's network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan.
·
Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health
Your Rights and Insurance 319
plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care. ·
Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans.
Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.
Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: ·
Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process.
·
Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all.
·
Ensure that persons with disabilities have effective communications with members of the health system in making such decisions.
·
Discuss all current treatments a consumer may be undergoing.
·
Discuss all risks, nontreatment.
·
Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.
benefits,
and
consequences
to
treatment
or
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·
Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members.
·
Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.
Health plans, health providers, and healthcare facilities should: ·
Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions.
·
Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers' ability to communicate with and advise patients about medically necessary treatment options.
·
Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients.
Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: ·
Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment.
·
Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. Confidentiality of Health Information
Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable
Your Rights and Insurance 321
healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records. Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient's Bill of Rights is available from the American Hospital Association.57
Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”58 In a healthcare system that protects consumers' rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: ·
Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet.
·
Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans.
·
Disclose relevant information and clearly communicate wants and needs.
·
Use your health insurance plan's internal complaint and appeal processes to address your concerns.
·
Avoid knowingly spreading disease.
57 To order your free copy of the Patient's Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient's Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 58 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1.
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·
Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional.
·
Be aware of a healthcare provider's obligation to be reasonably efficient and equitable in providing care to other patients and the community.
·
Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions.
·
Show respect for other patients and health workers.
·
Make a good-faith effort to meet financial obligations.
·
Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs.
Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.59 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.60 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer's human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits.
More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 60 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 59
Your Rights and Insurance 323
3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan's summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse's employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer's plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan's notice. Be sure to follow up with your plan sponsor if you don't receive notice, and make sure you respond within the allotted time.
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7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer's human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan's decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer.
Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation's largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful
Your Rights and Insurance 325
contact information on how to find more in-depth information about Medicaid.61
Who is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: ·
You are already receiving retirement benefits from Social Security or the Railroad Retirement Board.
·
You are eligible to receive Social Security or Railroad benefits but have not yet filed for them.
·
You or your spouse had Medicare-covered government employment.
If you are under 65, you can get Part A without having to pay premiums if: ·
You have received Social Security or Railroad Retirement Board disability benefit for 24 months.
·
You are a kidney dialysis or kidney transplant patient.
Medicare has two parts: ·
Part A (Hospital Insurance). Most people do not have to pay for Part A.
·
Part B (Medical Insurance). Most people pay monthly for Part B. Part A (Hospital Insurance)
Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare.
This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp.
61
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Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The
Your Rights and Insurance 327
phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans.
Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare's premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: ·
Part A (Hospital Insurance),
·
Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and
·
A monthly income that is below certain limits.
For more information on these programs, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp.
NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.62 NORD Adapted from NORD: http://www.rarediseases.org/cgibin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30.
62
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programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org.
Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:63 ·
Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html
·
Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html
·
HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html
·
Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html
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Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html
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Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html
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Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html
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Patient's Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html
You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html.
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APPENDIX F. NEUROLOGICAL SEQUELAE OF LUPUS Overview Lupus (also called systemic lupus erythematosus or SLE) is a disorder of the immune system which normally functions to protect the body against invading infections and cancers. In lupus, the immune system is over-active and produces increased amounts of abnormal antibodies that attack the patient's own tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, nervous system, and blood vessels. The signs and symptoms of lupus differ from person to person, and the disease can range from mild to life-threatening. Typical features of lupus include a butterfly shaped rash over the cheeks, a skin rash appearing in areas exposed to the sun, sores in the mouth and nose, arthritis involving one or more joints, kidney inflammation, neurological disorders such as headaches, personality changes, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems including paranoia, mania, and schizophrenia, seizures, transverse myelitis, and paralysis and stroke. Fever, weight loss, hair loss, poor circulation in the fingers and toes, chest pain when taking deep breaths, and abdominal pain may also occur.
Is There Any Treatment?64 There is no cure for lupus. Treatment is symptomatic. With a combination of medication, rest, exercise, proper nutrition, and stress management, most Adapted from the National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/disorders/lupus_doc.htm.
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individuals with lupus can often achieve remission or an amelioration of symptoms that improves their quality of life. Medications used in the treatment of lupus may include aspirin and other nonsteroidal antiinflammatory drugs, antimalarials, corticosteroids, and other immunosuppressants.
What Is the Prognosis? The prognosis for lupus varies widely depending on the organs involved and the intensity of the inflammatory reaction. The course of lupus is commonly chronic and relapsing, often with long periods of remission. Most patients with lupus have a normal lifespan with periodic doctor visits and treatments with various drugs. Many of the more serious problems do not affect most patients. Death is usually caused by renal failure or infection.
What Research Is Being Done? Investigators researching lupus seek to increase scientific understanding of the disorder and to find ways to treat, prevent, and ultimately, cure it. Several components of the National Institutes of Health support research on lupus.
For More Information For more information, contact: American Autoimmune Related Diseases Association 22100 Gratiot Avenue Eastpointe East Detroit, MI 48201-2227
[email protected] http://www.aarda.org Tel: 586-776-3900 800-598-4668 Fax: 586-776-3903 Lupus Foundation of America 1300 Piccard Drive Suite 200 Rockville, MD 20850-4303
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[email protected] http://www.lupus.org Tel: 301-670-9292 800-558-0121 Fax: 301-670-9486 National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) National Institutes of Health Bldg. 31, Rm. 4C05 Bethesda, MD 20892-2350
[email protected] http://www.nih.gov/niams Tel: 301-496-8188 877-22-NIAMS (226-4267)
Vocabulary Builder Auscultation: The act of listening for sounds within the body, chiefly for ascertaining the condition of the lungs, heart, pleura, abdomen and other organs, and for the detection of pregnancy. [EU] Mania: Excitement of psychotic proportions manifested by mental and physical hyperactivity, disorganization of behaviour, and elevation of mood. [EU]
Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Paranoia: A psychotic disorder marked by persistent delusions of persecution or delusional jealousy and behaviour like that of the paranoid personality, such as suspiciousness, mistrust, and combativeness. It differs from paranoid schizophrenia, in which hallucinations or formal thought disorder are present, in that the delusions are logically consistent and that there are no other psychotic features. The designation in DSM III-R is delusional (paranoid) disorders, with five types : persecutory, jealous, erotomanic, somatic, and grandiose. [EU] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH]
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ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: ·
ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html
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MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp
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Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/
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Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html
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On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/
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Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm
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Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html
Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a) and drkoop.com (http://www.drkoop.com/). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to lupus and keep them on file. The NIH, in particular, suggests that patients with lupus visit the following Web sites in the ADAM Medical Encyclopedia:
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·
Basic Guidelines for Lupus Lupus - resources Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002160.htm Lupus anticoagulant Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000547.htm Lupus nephritis Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000481.htm
·
Signs & Symptoms for Lupus Bleeding gums Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003062.htm Blood in the urine Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003138.htm Bruising Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm Chest pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003079.htm Cough Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003072.htm Decreased urine output Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003147.htm
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Edema Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003103.htm Fatigue Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm Fever Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003090.htm Joint pain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm Joint swelling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003262.htm Menstrual periods, abnormal Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003263.htm Nosebleed - symptom Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003106.htm Rash Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm Seizures Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003200.htm Skin rash Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm
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Skin redness or inflammation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm Swelling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003103.htm Vaginal bleeding between periods Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003156.htm ·
Diagnostics and Tests for Lupus ANA Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003535.htm Antinuclear antibody Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003535.htm Blood pressure Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003398.htm BUN Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm Casts Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003586.htm Complement Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003456.htm Complement component 3 Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003539.htm
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Creatinine Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm Dialysis Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003421.htm Kidney biopsy Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003907.htm PTT Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003653.htm Urinalysis Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003579.htm Urine immunoglobulin light chain Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003597.htm ·
Nutrition for Lupus Protein Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002467.htm
·
Surgery and Procedures for Lupus Abortion Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002912.htm Kidney transplant Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003005.htm
·
Background Topics for Lupus
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Acute Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002215.htm Antibodies Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002223.htm Auscultation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002226.htm Bleeding Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000045.htm Blood clots Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001124.htm Clot Web site: http://www.nlm.nih.gov/medlineplus/ency/article/001124.htm Incidence Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002387.htm Inflammatory response Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000821.htm Nose bleeds Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000020.htm Renal Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002289.htm
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Titer Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002328.htm
Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: ·
Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical
·
MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html
·
Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/
·
Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine
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LUPUS GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Aberrant: Wandering or deviating from the usual or normal course. [EU] Abortion: 1. the premature expulsion from the uterus of the products of conception - of the embryo, or of a nonviable fetus. The four classic symptoms, usually present in each type of abortion, are uterine contractions, uterine haemorrhage, softening and dilatation of the cervix, and presentation or expulsion of all or part of the products of conception. 2. premature stoppage of a natural or a pathological process. [EU] Acetaminophen: Analgesic antipyretic derivative of acetanilide. It has weak anti-inflammatory properties and is used as a common analgesic, but may cause liver, blood cell, and kidney damage. [NIH] Acidity: L. aciditas) the quality of being acid or sour; containing acid (hydrogen ions). [EU] Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] Acne: An inflammatory disease of the pilosebaceous unit, the specific type usually being indicated by a modifying term; frequently used alone to designate common acne, or acne vulgaris. [EU] Adjuvant: A substance which aids another, such as an auxiliary remedy; in immunology, nonspecific stimulator (e.g., BCG vaccine) of the immune response. [EU] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH]
Aerobic: 1. having molecular oxygen present. 2. growing, living, or occurring in the presence of molecular oxygen. 3. requiring oxygen for respiration. [EU] Alkalosis: A pathologic condition resulting from accumulation of base, or
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from loss of acid without comparable loss of base in the body fluids, and characterized by decrease in hydrogen ion concentration (increase in pH). [EU]
Alleles: Mutually exclusive forms of the same gene, occupying the same locus on homologous chromosomes, and governing the same biochemical and developmental process. [NIH] Allergen: A antigenic substance capable of producing immediate-type hypersensitivity (allergy). [EU] Alopecia: Baldness; absence of the hair from skin areas where it normally is present. [EU] Aluminum: A metallic element that has the atomic number 13, atomic symbol Al, and atomic weight 26.98. [NIH] Amitriptyline: Tricyclic antidepressant with anticholinergic and sedative properties. It appears to prevent the re-uptake of norepinephrine and serotonin at nerve terminals, thus potentiating the action of these neurotransmitters. Amitriptyline also appears to antaganize cholinergic and alpha-1 adrenergic responses to bioactive amines. [NIH] Analgesic: An agent that alleviates pain without causing loss of consciousness. [EU] Anaphylaxis: An acute hypersensitivity reaction due to exposure to a previously encountered antigen. The reaction may include rapidly progressing urticaria, respiratory distress, vascular collapse, systemic shock, and death. [NIH] Androgens: A class of sex hormones associated with the development and maintenance of the secondary male sex characteristics, sperm induction, and sexual differentiation. In addition to increasing virility and libido, they also increase nitrogen and water retention and stimulate skeletal growth. [NIH] Androstenedione: A steroid with androgenic properties that is produced in the testis, ovary, and adrenal cortex. It is a precursor to testosterone and other androgenic hormones. [NIH] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Angioedema: A vascular reaction involving the deep dermis or subcutaneous or submucal tissues, representing localized edema caused by dilatation and increased permeability of the capillaries, and characterized by development of giant wheals. [EU] Antibacterial: A substance that destroys bacteria or suppresses their growth or reproduction. [EU] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other
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microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Antibody: An immunoglobulin molecule that has a specific amino acid sequence by virtue of which it interacts only with the antigen that induced its synthesis in cells of the lymphoid series (especially plasma cells), or with antigen closely related to it. Antibodies are classified according to their ode of action as agglutinins, bacteriolysins, haemolysins, opsonins, precipitins, etc. [EU] Anticoagulants: Agents that prevent blood clotting. Naturally occurring agents in the blood are included only when they are used as drugs. [NIH] Anticonvulsant: An agent that prevents or relieves convulsions. [EU] Antigen: Any substance which is capable, under appropriate conditions, of inducing a specific immune response and of reacting with the products of that response, that is, with specific antibody or specifically sensitized Tlymphocytes, or both. Antigens may be soluble substances, such as toxins and foreign proteins, or particulate, such as bacteria and tissue cells; however, only the portion of the protein or polysaccharide molecule known as the antigenic determinant (q.v.) combines with antibody or a specific receptor on a lymphocyte. Abbreviated Ag. [EU] Antihistamine: A drug that counteracts the action of histamine. The antihistamines are of two types. The conventional ones, as those used in allergies, block the H1 histamine receptors, whereas the others block the H2 receptors. Called also antihistaminic. [EU] Antimicrobial: Killing microorganisms, or suppressing their multiplication or growth. [EU] Antioxidant: One of many widely used synthetic or natural substances added to a product to prevent or delay its deterioration by action of oxygen in the air. Rubber, paints, vegetable oils, and prepared foods commonly contain antioxidants. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Aplasia: Lack of development of an organ or tissue, or of the cellular products from an organ or tissue. [EU] Arginine: An essential amino acid that is physiologically active in the Lform. [NIH]
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Arterial: Pertaining to an artery or to the arteries. [EU] Arteries: The vessels carrying blood away from the heart. [NIH] Arteriography: Roentgenography of arteries after injection of radiopacque material into the blood stream. [EU] Arteritis: Inflammation of an artery. [NIH] Arthrography: Roentgenography of a joint, usually after injection of either positive or negative contrast medium. [NIH] Arthroplasty: Surgical reconstruction of a joint to relieve pain or restore motion. [NIH] Arthroscopy: Endoscopic examination, therapy and surgery of the joint. [NIH] Ascites: Effusion and accumulation of serous fluid in the abdominal cavity; called also abdominal or peritoneal dropsy, hydroperitonia, and hydrops abdominis. [EU] Aspiration: The act of inhaling. [EU] Assay: Determination of the amount of a particular constituent of a mixture, or of the biological or pharmacological potency of a drug. [EU] Atrioventricular: Pertaining to an atrium of the heart and to a ventricle. [EU] Atypical: Irregular; not conformable to the type; in microbiology, applied specifically to strains of unusual type. [EU] Auditory: Pertaining to the sense of hearing. [EU] Auscultation: The act of listening for sounds within the body, chiefly for ascertaining the condition of the lungs, heart, pleura, abdomen and other organs, and for the detection of pregnancy. [EU] Autoantigens: Endogenous tissue constituents that have the ability to interact with autoantibodies and cause an immune response. [NIH] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Bile: An emulsifying agent produced in the liver and secreted into the duodenum. Its composition includes bile acids and salts, cholesterol, and electrolytes. It aids digestion of fats in the duodenum. [NIH] Biliary: Pertaining to the bile, to the bile ducts, or to the gallbladder. [EU] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from
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the living body, performed to establish precise diagnosis. [EU] Bromocriptine: A semisynthetic ergot alkaloid that is a dopamine D2 agonist. It suppresses prolactin secretion and is used to treat amenorrhea, galactorrhea, and female infertility, and has been proposed for Parkinson disease. [NIH] Bullous: Pertaining to or characterized by bullae. [EU] Bumetanide: A sulfamyl diuretic. [NIH] Bursitis: Inflammation of a bursa, occasionally accompanied by a calcific deposit in the underlying supraspinatus tendon; the most common site is the subdeltoid bursa. [EU] Calcification: The process by which organic tissue becomes hardened by a deposit of calcium salts within its substance. [EU] Candidiasis: Infection with a fungus of the genus Candida. It is usually a superficial infection of the moist cutaneous areas of the body, and is generally caused by C. albicans; it most commonly involves the skin (dermatocandidiasis), oral mucous membranes (thrush, def. 1), respiratory tract (bronchocandidiasis), and vagina (vaginitis). Rarely there is a systemic infection or endocarditis. Called also moniliasis, candidosis, oidiomycosis, and formerly blastodendriosis. [EU] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Captopril: A potent and specific inhibitor of peptidyl-dipeptidase A. It blocks the conversion of angiotensin I to angiotensin II, a vasoconstrictor and important regulator of arterial blood pressure. Captopril acts to suppress the renin-angiotensin system and inhibits pressure responses to exogenous angiotensin. [NIH] Carbamazepine: An anticonvulsant used to control grand mal and psychomotor or focal seizures. Its mode of action is not fully understood, but some of its actions resemble those of phenytoin; although there is little chemical resemblance between the two compounds, their three-dimensional structure is similar. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Carcinoma: A malignant new growth made up of epithelial cells tending to infiltrate the surrounding tissues and give rise to metastases. [EU] Cardiac: Pertaining to the heart. [EU]
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Cardiolipins: Acidic phospholipids composed of two molecules of phosphatidic acid covalently linked to a molecule of glycerol. They occur primarily in mitochondrial inner membranes and in bacterial plasma membranes. They are the main antigenic components of the Wassermanntype antigen that is used in nontreponemal syphilis serodiagnosis. [NIH] Cardiology: The study of the heart, its physiology, and its functions. [NIH] Cardiopulmonary: Pertaining to the heart and lungs. [EU] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Carotene: The general name for a group of pigments found in green, yellow, and leafy vegetables, and yellow fruits. The pigments are fat-soluble, unsaturated aliphatic hydrocarbons functioning as provitamins and are converted to vitamin A through enzymatic processes in the intestinal wall. [NIH]
Catalase: An oxidoreductase that catalyzes the conversion of hydrogen peroxide to water and oxygen. It is present in many animal cells. A deficiency of this enzyme results in acatalasia. EC 1.11.1.6. [NIH] Cataract: An opacity, partial or complete, of one or both eyes, on or in the lens or capsule, especially an opacity impairing vision or causing blindness. The many kinds of cataract are classified by their morphology (size, shape, location) or etiology (cause and time of occurrence). [EU] Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine. [EU]
Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Chelation: Combination with a metal in complexes in which the metal is part of a ring. [EU] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Chlorpromazine: The prototypical phenothiazine antipsychotic drug. Like the other drugs in this class chlorpromazine's antipsychotic actions are thought to be due to long-term adaptation by the brain to blocking dopamine receptors. Chlorpromazine has several other actions and therapeutic uses, including as an antiemetic and in the treatment of intractable hiccup. [NIH] Chronic: Persisting over a long period of time. [EU] Clarithromycin: A semisynthetic macrolide antibiotic derived from erythromycin that is active against a variety of microorganisms. It can inhibit
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protein synthesis in bacteria by reversibly binding to the 50S ribosomal subunits. This inhibits the translocation of aminoacyl transfer-RNA and prevents peptide chain elongation. [NIH] Coagulation: 1. the process of clot formation. 2. in colloid chemistry, the solidification of a sol into a gelatinous mass; an alteration of a disperse phase or of a dissolved solid which causes the separation of the system into a liquid phase and an insoluble mass called the clot or curd. Coagulation is usually irreversible. 3. in surgery, the disruption of tissue by physical means to form an amorphous residuum, as in electrocoagulation and photocoagulation. [EU] Colitis: Inflammation of the colon. [EU] Collagen: The protein substance of the white fibres (collagenous fibres) of skin, tendon, bone, cartilage, and all other connective tissue; composed of molecules of tropocollagen (q.v.), it is converted into gelatin by boiling. collagenous pertaining to collagen; forming or producing collagen. [EU] Concomitant: Accompanying; accessory; joined with another. [EU] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Conjugated: Acting or operating as if joined; simultaneous. [EU] Constipation: Infrequent or difficult evacuation of the faeces. [EU] Constitutional: 1. affecting the whole constitution of the body; not local. 2. pertaining to the constitution. [EU] Contraception: The prevention of conception or impregnation. [EU] Contraceptive: conception. [EU]
An agent that diminishes the likelihood of or prevents
Contracture: A condition of fixed high resistance to passive stretch of a muscle, resulting from fibrosis of the tissues supporting the muscles or the joints, or from disorders of the muscle fibres. [EU] Coronary: Encircling in the manner of a crown; a term applied to vessels; nerves, ligaments, etc. The term usually denotes the arteries that supply the heart muscle and, by extension, a pathologic involvement of them. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Cortical: Pertaining to or of the nature of a cortex or bark. [EU] Criterion: A standard by which something may be judged. [EU] Cryopreservation: Preservation of cells, tissues, organs, or embryos by freezing. In histological preparations, cryopreservation or cryofixation is used to maintain the existing form, structure, and chemical composition of all the constituent elements of the specimens. [NIH]
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Curative: Tending to overcome disease and promote recovery. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cyclophosphamide: Precursor of an alkylating nitrogen mustard antineoplastic and immunosuppressive agent that must be activated in the liver to form the active aldophosphamide. It is used in the treatment of lymphomas, leukemias, etc. Its side effect, alopecia, has been made use of in defleecing sheep. Cyclophosphamide may also cause sterility, birth defects, mutations, and cancer. [NIH] Cystitis: Inflammation of the urinary bladder. [EU] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Cytotoxic: Pertaining to or exhibiting cytotoxicity. [EU] Danazol: A synthetic steroid with antigonadotropic and anti-estrogenic activities that acts as an anterior pituitary suppressant by inhibiting the pituitary output of gonadotropins. It possesses some androgenic properties. Danazol has been used in the treatment of endometriosis and some benign breast disorders. [NIH] Degenerative: Undergoing degeneration : tending to degenerate; having the character of or involving degeneration; causing or tending to cause degeneration. [EU] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Dentists: Individuals licensed to practice dentistry. [NIH] Dermatology: A medical specialty concerned with the skin, its structure, functions, diseases, and treatment. [NIH] Desensitization: The prevention or reduction of immediate hypersensitivity reactions by administration of graded doses of allergen; called also hyposensitization and immunotherapy. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Diflunisal: A salicylate derivative and anti-inflammatory analgesic with actions and side effects similar to those of aspirin. [NIH] Discoid: Shaped like a disk. [EU] Distal: Remote; farther from any point of reference; opposed to proximal. In dentistry, used to designate a position on the dental arch farther from the median line of the jaw. [EU] Dizziness:
An imprecise term which may refer to a sense of spatial
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disorientation, motion of the environment, or lightheadedness. [NIH] Doxycycline: A synthetic tetracycline derivative with a range of antimicrobial activity and mode of action similar to that of tetracycline, but more effective against many species. Animal studies suggest that it may cause less tooth staining than other tetracyclines. [NIH] Echinacea: A genus of perennial herbs used topically and internally. It contains echinacoside, glycosides, inulin, isobutyl amides, resin, and sesquiterpenes. [NIH] Echocardiography: Ultrasonic recording of the size, motion, and composition of the heart and surrounding tissues. The standard approach is transthoracic. [NIH] Eczema: A pruritic papulovesicular dermatitis occurring as a reaction to many endogenous and exogenous agents, characterized in the acute stage by erythema, edema associated with a serous exudate between the cells of the epidermis (spongiosis) and an inflammatory infiltrate in the dermis, oozing and vesiculation, and crusting and scaling; and in the more chronic stages by lichenification or thickening or both, signs of excoriations, and hyperpigmentation or hypopigmentation or both. Atopic dermatitis is the most common type of dermatitis. Called also eczematous dermatitis. [EU] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Electrolyte: A substance that dissociates into ions when fused or in solution, and thus becomes capable of conducting electricity; an ionic solute. [EU] Endocarditis: Exudative and proliferative inflammatory alterations of the endocardium, characterized by the presence of vegetations on the surface of the endocardium or in the endocardium itself, and most commonly involving a heart valve, but sometimes affecting the inner lining of the cardiac chambers or the endocardium elsewhere. It may occur as a primary disorder or as a complication of or in association with another disease. [EU] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Eosinophilia: The formation and accumulation of an abnormally large number of eosinophils in the blood. [EU]
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Epitopes: Sites on an antigen that interact with specific antibodies. [NIH] Erythrocytes: Red blood cells. Mature erythrocytes are non-nucleated, biconcave disks containing hemoglobin whose function is to transport oxygen. [NIH] Esophagitis: Inflammation, acute or chronic, of the esophagus caused by bacteria, chemicals, or trauma. [NIH] Estrogens: A class of sex hormones associated with the development and maintenance of secondary female sex characteristics and control of the cyclical changes in the reproductive cycle. They are also required for pregnancy maintenance and have an anabolic effect on protein metabolism and water retention. [NIH] Ethacrynic Acid: A compound that inhibits symport of sodium, potassium, and chloride primarily in the ascending limb of Henle, but also in the proximal and distal tubules. This pharmacological action results in excretion of these ions, increased urinary output, and reduction in extracelluar fluid. This compound has been classified as a loop or high ceiling diuretic. [NIH] Ethosuximide: An anticonvulsant especially useful in the treatment of absence seizures unaccompanied by other types of seizures. [NIH] Etodolac: A nonsteroidal anti-inflammatory agent with potent analgesic and antiarthritic properties. It has been shown to be effective in the treatment of osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, and in the alleviation of postoperative pain. [NIH] Exogenous: Developed or originating outside the organism, as exogenous disease. [EU] Extracorporeal: Situated or occurring outside the body. [EU] Extraction: The process or act of pulling or drawing out. [EU] Exudate: Material, such as fluid, cells, or cellular debris, which has escaped from blood vessels and has been deposited in tissues or on tissue surfaces, usually as a result of inflammation. An exudate, in contrast to a transudate, is characterized by a high content of protein, cells, or solid materials derived from cells. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Femoral: Pertaining to the femur, or to the thigh. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Friction: Surface resistance to the relative motion of one body against the rubbing, sliding, rolling, or flowing of another with which it is in contact. [NIH]
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Furosemide: A sulfamyl saluretic and diuretic. It has a fast onset and short duration of action and is used in edema and chronic renal insufficiency. [NIH] Gadolinium: Gadolinium. An element of the rare earth family of metals. It has the atomic symbol Gd, atomic number 64, and atomic weight 157.25. Its oxide is used in the control rods of some nuclear reactors. [NIH] Gastrointestinal: Pertaining to or communicating with the stomach and intestine, as a gastrointestinal fistula. [EU] Glomerular: Pertaining to or of the nature of a glomerulus, especially a renal glomerulus. [EU] Glomerulonephritis: A variety of nephritis characterized by inflammation of the capillary loops in the glomeruli of the kidney. It occurs in acute, subacute, and chronic forms and may be secondary to haemolytic streptococcal infection. Evidence also supports possible immune or autoimmune mechanisms. [EU] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Glycine: A non-essential amino acid. It is found primarily in gelatin and silk fibroin and used therapeutically as a nutrient. It is also a fast inhibitory neurotransmitter. [NIH] Gold Sodium Thiomalate: A variable mixture of the mono- and disodium salts of gold thiomalic acid used mainly for its anti-inflammatory action in the treatment of rheumatoid arthritis. It is most effective in active progressive rheumatoid arthritis and of little or no value in the presence of extensive deformities or in the treatment of other forms of arthritis. [NIH] Gonadal: Pertaining to a gonad. [EU] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Granuloma: A relatively small nodular inflammatory lesion containing grouped mononuclear phagocytes, caused by infectious and noninfectious agents. [NIH] Griseofulvin: An antifungal antibiotic. Griseofulvin may be given by mouth in the treatment of tinea infections. [NIH] Gynecology: A medical-surgical specialty concerned with the physiology
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and disorders primarily of the female genital tract, as well as female endocrinology and reproductive physiology. [NIH] Haemostasis: The arrest of bleeding, either by the physiological properties of vasoconstriction and coagulation or by surgical means. [EU] Haplotypes: The genetic constitution of individuals with respect to one member of a pair of allelic genes, or sets of genes that are closely linked and tend to be inherited together such as those of the major histocompatibility complex. [NIH] Heartburn: Substernal pain or burning sensation, usually associated with regurgitation of gastric juice into the esophagus. [NIH] Hematocrit: Measurement of the volume of packed red cells in a blood specimen by centrifugation. The procedure is performed using a tube with graduated markings or with automated blood cell counters. It is used as an indicator of erythrocyte status in disease. For example, anemia shows a low hematocrit, polycythemia, high values. [NIH] Hematuria: Presence of blood in the urine. [NIH] Hemiplegia: Paralysis of one side of the body. [EU] Hemofiltration: Extracorporeal ultrafiltration technique without hemodialysis for treatment of fluid overload and electrolyte disturbances affecting renal, cardiac, or pulmonary function. [NIH] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Heparin: Heparinic acid. A highly acidic mucopolysaccharide formed of equal parts of sulfated D-glucosamine and D-glucuronic acid with sulfaminic bridges. The molecular weight ranges from six to twenty thousand. Heparin occurs in and is obtained from liver, lung, mast cells, etc., of vertebrates. Its function is unknown, but it is used to prevent blood clotting in vivo and vitro, in the form of many different salts. [NIH] Hepatic: Pertaining to the liver. [EU] Hepatitis: Inflammation of the liver. [EU] Heredity: 1. the genetic transmission of a particular quality or trait from parent to offspring. 2. the genetic constitution of an individual. [EU] Hernia: (he protrusion of a loop or knuckle of an organ or tissue through an abnormal opening. [EU] Histocompatibility: The degree of antigenic similarity between the tissues of different individuals, which determines the acceptance or rejection of allografts. [NIH] Homicide: The killing of one person by another. [NIH] Homologous: Corresponding in structure, position, origin, etc., as (a) the feathers of a bird and the scales of a fish, (b) antigen and its specific
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antibody, (c) allelic chromosomes. [EU] Hormonal: Pertaining to or of the nature of a hormone. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Humoral: Of, relating to, proceeding from, or involving a bodily humour now often used of endocrine factors as opposed to neural or somatic. [EU] Hydralazine: A direct-acting vasodilator that is used as an antihypertensive agent. [NIH] Hydrocortisone: The main glucocorticoid secreted by the adrenal cortex. Its synthetic counterpart is used, either as an injection or topically, in the treatment of inflammation, allergy, collagen diseases, asthma, adrenocortical deficiency, shock, and some neoplastic conditions. [NIH] Hypercalcemia: Abnormally high level of calcium in the blood. [NIH] Hypercholesterolemia: Abnormally high levels of cholesterol in the blood. [NIH]
Hyperlipidemia: An excess of lipids in the blood. [NIH] Hypersensitivity: A state of altered reactivity in which the body reacts with an exaggerated immune response to a foreign substance. Hypersensitivity reactions are classified as immediate or delayed, types I and IV, respectively, in the Gell and Coombs classification (q.v.) of immune responses. [EU] Hypertension: Persistently high arterial blood pressure. Various criteria for its threshold have been suggested, ranging from 140 mm. Hg systolic and 90 mm. Hg diastolic to as high as 200 mm. Hg systolic and 110 mm. Hg diastolic. Hypertension may have no known cause (essential or idiopathic h.) or be associated with other primary diseases (secondary h.). [EU] Hypnotic: A drug that acts to induce sleep. [EU] Hypotension: Abnormally low blood pressure; seen in shock but not necessarily indicative of it. [EU] Ibuprofen: A nonsteroidal anti-inflammatory agent with analgesic properties used in the therapy of rheumatism and arthritis. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Immunity: The condition of being immune; the protection against infectious disease conferred either by the immune response generated by immunization or previous infection or by other nonimmunologic factors
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(innate i.). [EU] Immunization: The induction of immunity. [EU] Immunodiffusion: Technique involving the diffusion of antigen or antibody through a semisolid medium, usually agar or agarose gel, with the result being a precipitin reaction. [NIH] Immunogenetics: A branch of genetics which deals with the genetic basis of the immune response. [NIH] Immunogenic: Producing immunity; evoking an immune response. [EU] Immunosuppressant: An agent capable of suppressing immune responses. [EU]
Immunotherapy: Manipulation of the host's immune system in treatment of disease. It includes both active and passive immunization as well as immunosuppressive therapy to prevent graft rejection. [NIH] Incision: 1. cleft, cut, gash. 2. an act or action of incising. [EU] Incontinence: Inability to control excretory functions, as defecation (faecal i.) or urination (urinary i.). [EU] Indapamide: A sulfamyl diuretic with about 16x the effect of furosemide. It has also been shown to be an effective antihypertensive agent in the clinic. [NIH]
Indicative: That indicates; that points out more or less exactly; that reveals fairly clearly. [EU] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infarction: 1. the formation of an infarct. 2. an infarct. [EU] Infertility: The diminished or absent ability to conceive or produce an offspring while sterility is the complete inability to conceive or produce an offspring. [NIH] Infiltration: The diffusion or accumulation in a tissue or cells of substances not normal to it or in amounts of the normal. Also, the material so accumulated. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Influenza: An acute viral infection involving the respiratory tract. It is marked by inflammation of the nasal mucosa, the pharynx, and conjunctiva, and by headache and severe, often generalized, myalgia. [NIH]
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Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU]
Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator of protein and lipid metabolism. Insulin is used as a drug to control insulindependent diabetes mellitus. [NIH] Interleukins: Soluble factors which stimulate growth-related activities of leukocytes as well as other cell types. They enhance cell proliferation and differentiation, DNA synthesis, secretion of other biologically active molecules and responses to immune and inflammatory stimuli. [NIH] Intermittent: Occurring at separated intervals; having periods of cessation of activity. [EU] Interstitial: Pertaining to or situated between parts or in the interspaces of a tissue. [EU] Intestines: The section of the alimentary canal from the stomach to the anus. It includes the large intestine and small intestine. [NIH] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Invasive: 1. having the quality of invasiveness. 2. involving puncture or incision of the skin or insertion of an instrument or foreign material into the body; said of diagnostic techniques. [EU] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH]
Jaundice: A clinical manifestation of hyperbilirubinemia, consisting of deposition of bile pigments in the skin, resulting in a yellowish staining of the skin and mucous membranes. [NIH] Keratoconjunctivitis: Inflammation of the cornea and conjunctiva. [EU] Ketoprofen: An ibuprofen-type anti-inflammatory analgesic and antipyretic. It is used in the treatment of rheumatoid arthritis and osteoarthritis. [NIH] Kinetic: Pertaining to or producing motion. [EU] Lacrimal: Pertaining to the tears. [EU] Laminin: Large, noncollagenous glycoprotein with antigenic properties. It is localized in the basement membrane lamina lucida and functions to bind epithelial cells to the basement membrane. Evidence suggests that the
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protein plays a role in tumor invasion. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Ligament: A band of fibrous tissue that connects bones or cartilages, serving to support and strengthen joints. [EU] Ligation: Application of a ligature to tie a vessel or strangulate a part. [NIH] Lipoprotein: Any of the lipid-protein complexes in which lipids are transported in the blood; lipoprotein particles consist of a spherical hydrophobic core of triglycerides or cholesterol esters surrounded by an amphipathic monolayer of phospholipids, cholesterol, and apolipoproteins; the four principal classes are high-density, low-density, and very-lowdensity lipoproteins and chylomicrons. [EU] Lithium: Lithium. An element in the alkali metals family. It has the atomic symbol Li, atomic number 3, and atomic weight 6.94. Salts of lithium are used in treating manic-depressive disorders. [NIH] Lubrication: The application of a substance to diminish friction between two surfaces. It may refer to oils, greases, and similar substances for the lubrication of medical equipment but it can be used for the application of substances to tissue to reduce friction, such as lotions for skin and vaginal lubricants. [NIH] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH]
Lymphocytic: Pertaining to, characterized by, or of the nature of lymphocytes. [EU] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malaise: A vague feeling of bodily discomfort. [EU] Malignant: Tending to become progressively worse and to result in death. Having the properties of anaplasia, invasion, and metastasis; said of tumours. [EU] Mania: Excitement of psychotic proportions manifested by mental and physical hyperactivity, disorganization of behaviour, and elevation of mood. [EU]
Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that
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induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Medicament: A medicinal substance or agent. [EU] Medullary: Pertaining to the marrow or to any medulla; resembling marrow. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Menopause: Cessation of menstruation in the human female, occurring usually around the age of 50. [EU] Mesenteric: Pertaining to the mesentery : a membranous fold attaching various organs to the body wall. [EU] Methimazole: A thioureylene antithyroid agent that inhibits the formation of thyroid hormones by interfering with the incorporation of iodine into tyrosyl residues of thyroglobulin. This is done by interfering with the oxidation of iodide ion and iodotyrosyl groups through inhibition of the peroxidase enzyme. [NIH] Methotrexate: An antineoplastic antimetabolite with immunosuppressant properties. It is an inhibitor of dihydrofolate reductase and prevents the formation of tetrahydrofolate, necessary for synthesis of thymidylate, an essential component of DNA. [NIH] Metolazone: A potent, long acting diuretic useful in chronic renal disease. It also tends to lower blood pressure and increase potassium loss. [NIH] Metoprolol: Adrenergic beta-1-blocking agent with no stimulatory action. It is less bound to plasma albumin than alprenolol and may be useful in angina pectoris, hypertension, or cardiac arrhythmias. [NIH] Microbiology: The study of microorganisms such as fungi, bacteria, algae, archaea, and viruses. [NIH] Microscopy: The application of microscope magnification to the study of materials that cannot be properly seen by the unaided eye. [NIH] Microspheres: Small uniformly-sized spherical particles frequently labeled with radioisotopes or various reagents acting as tags or markers. [NIH] Minocycline: A semisynthetic antibiotic effective against tetracyclineresistant staphylococcus infections. [NIH] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Mobilization: The process of making a fixed part or stored substance mobile, as by separating a part from surrounding structures to make it accessible for an operative procedure or by causing release into the circulation for body use of a substance stored in the body. [EU]
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Molecular: Of, pertaining to, or composed of molecules : a very small mass of matter. [EU] Monocytes: Large, phagocytic mononuclear leukocytes produced in the vertebrate bone marrow and released into the blood; contain a large, oval or somewhat indented nucleus surrounded by voluminous cytoplasm and numerous organelles. [NIH] Mononucleosis: The presence of an abnormally large number of mononuclear leucocytes (monocytes) in the blood. The term is often used alone to refer to infectious mononucleosis. [EU] Morale: The prevailing temper or spirit of an individual or group in relation to the tasks or functions which are expected. [NIH] Mucocutaneous: Pertaining to or affecting the mucous membrane and the skin. [EU] Mucosa: A mucous membrane, or tunica mucosa. [EU] Mucus: The free slime of the mucous membranes, composed of secretion of the glands, along with various inorganic salts, desquamated cells, and leucocytes. [EU] Mutagenesis: Process of generating genetic mutations. It may occur spontaneously or be induced by mutagens. [NIH] Mycoplasma: A genus of gram-negative, facultatively anaerobic bacteria bounded by a plasma membrane only. Its organisms are parasites and pathogens, found on the mucous membranes of humans, animals, and birds. [NIH]
Myocarditis: Inflammation of the myocardium; inflammation of the muscular walls of the heart. [EU] Myositis: Inflammation of a voluntary muscle. [EU] Naproxen: An anti-inflammatory agent with analgesic and antipyretic properties. Both the acid and its sodium salt are used in the treatment of rheumatoid arthritis and other rheumatic or musculoskeletal disorders, dysmenorrhea, and acute gout. [NIH] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Nephritis: Inflammation of the kidney; a focal or diffuse proliferative or destructive process which may involve the glomerulus, tubule, or interstitial renal tissue. [EU] Nephrology: A subspecialty of internal medicine concerned with the anatomy, physiology, and pathology of the kidney. [NIH] Nephropathy: Disease of the kidneys. [EU]
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Nephrotic: Pertaining to, resembling, or caused by nephrosis. [EU] Neural: 1. pertaining to a nerve or to the nerves. 2. situated in the region of the spinal axis, as the neutral arch. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the nervous system. [NIH] Neuropathy: A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system. The etiology may be known e.g. arsenical n., diabetic n., ischemic n., traumatic n.) or unknown. Encephalopathy and myelopathy are corresponding terms relating to involvement of the brain and spinal cord, respectively. The term is also used to designate noninflammatory lesions in the peripheral nervous system, in contrast to inflammatory lesions (neuritis). [EU] Neutrophil: Having an affinity for neutral dyes. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Nucleosomes: The repeating structural units of chromatin, each consisting of approximately 200 base pairs of DNA wound around a protein core. This core is composed of the histones H2A, H2B, H3, and H4. [NIH] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Oedema: The presence of abnormally large amounts of fluid in the intercellular tissue spaces of the body; usually applied to demonstrable accumulation of excessive fluid in the subcutaneous tissues. Edema may be localized, due to venous or lymphatic obstruction or to increased vascular permeability, or it may be systemic due to heart failure or renal disease. Collections of edema fluid are designated according to the site, e.g. ascites (peritoneal cavity), hydrothorax (pleural cavity), and hydropericardium (pericardial sac). Massive generalized edema is called anasarca. [EU] Ointments: Semisolid preparations used topically for protective emollient effects or as a vehicle for local administration of medications. Ointment bases are various mixtures of fats, waxes, animal and plant oils and solid and liquid hydrocarbons. [NIH] Ophthalmologic: Pertaining to ophthalmology (= the branch of medicine
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dealing with the eye). [EU] Ophthalmology: A surgical specialty concerned with the structure and function of the eye and the medical and surgical treatment of its defects and diseases. [NIH] Ornithine: An amino acid produced in the urea cycle by the splitting off of urea from arginine. [NIH] Orthopedics: A surgical specialty which utilizes medical, surgical, and physical methods to treat and correct deformities, diseases, and injuries to the skeletal system, its articulations, and associated structures. [NIH] Osteoarthritis: Noninflammatory degenerative joint disease occurring chiefly in older persons, characterized by degeneration of the articular cartilage, hypertrophy of bone at the margins, and changes in the synovial membrane. It is accompanied by pain and stiffness, particularly after prolonged activity. [EU] Osteodystrophy: Defective bone formation. [EU] Osteonecrosis: Death of a bone or part of a bone, either atraumatic or posttraumatic. [NIH] Osteoporosis: Reduction in the amount of bone mass, leading to fractures after minimal trauma. [EU] Osteotomy: The surgical cutting of a bone. [EU] Otolaryngology: A surgical specialty concerned with the study and treatment of disorders of the ear, nose, and throat. [NIH] Outpatients: Persons who receive ambulatory care at an outpatient department or clinic without room and board being provided. [NIH] Ovariectomy: The surgical removal of one or both ovaries. [NIH] Overdose: 1. to administer an excessive dose. 2. an excessive dose. [EU] Pacemaker: An object or substance that influences the rate at which a certain phenomenon occurs; often used alone to indicate the natural cardiac pacemaker or an artificial cardiac pacemaker. In biochemistry, a substance whose rate of reaction sets the pace for a series of interrelated reactions. [EU] Pancreas: A mixed exocrine and endocrine gland situated transversely across the posterior abdominal wall in the epigastric and hypochondriac regions. The endocrine portion is comprised of the islets of langerhans, while the exocrine portion is a compound acinar gland that secretes digestive enzymes. [NIH] Panniculitis: An inflammatory reaction of the subcutaneous fat, which may involve the connective tissue septa between the fat lobes, the septa lobules and vessels, or the fat lobules, characterized by the development of single or multiple cutaneous nodules. [EU]
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Paraffin: A mixture of solid hydrocarbons obtained from petroleum. It has a wide range of uses including as a stiffening agent in ointments, as a lubricant, and as a topical anti-inflammatory. It is also commonly used as an embedding material in histology. [NIH] Paralysis: Loss or impairment of motor function in a part due to lesion of the neural or muscular mechanism; also by analogy, impairment of sensory function (sensory paralysis). In addition to the types named below, paralysis is further distinguished as traumatic, syphilitic, toxic, etc., according to its cause; or as obturator, ulnar, etc., according to the nerve part, or muscle specially affected. [EU] Paranoia: A psychotic disorder marked by persistent delusions of persecution or delusional jealousy and behaviour like that of the paranoid personality, such as suspiciousness, mistrust, and combativeness. It differs from paranoid schizophrenia, in which hallucinations or formal thought disorder are present, in that the delusions are logically consistent and that there are no other psychotic features. The designation in DSM III-R is delusional (paranoid) disorders, with five types : persecutory, jealous, erotomanic, somatic, and grandiose. [EU] Parathyroid: 1. situated beside the thyroid gland. 2. one of the parathyroid glands. 3. a sterile preparation of the water-soluble principle(s) of the parathyroid glands, ad-ministered parenterally as an antihypocalcaemic, especially in the treatment of acute hypoparathyroidism with tetany. [EU] Particle: A tiny mass of material. [EU] Parvovirus: A genus of the family parvoviridae, subfamily parvovirinae, infecting a variety of vertebrates including humans. Parvoviruses are responsible for a number of important diseases but also can be nonpathogenic in certain hosts. The type species is mice minute virus. [NIH] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Penicillamine: 3-Mercapto-D-valine. The most characteristic degradation product of the penicillin antibiotics. It is used as an antirheumatic and as a chelating agent in Wilson's disease. [NIH] Peptic: Pertaining to pepsin or to digestion; related to the action of gastric juices. [EU] Pericarditis: Inflammation of the pericardium. [EU] Perivascular: Situated around a vessel. [EU] Pharmacists: Those persons legally qualified by education and training to engage in the practice of pharmacy. [NIH] Pharmacokinetics: The action of drugs in the body over a period of time, including the processes of absorption, distribution, localization in tissues,
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biotransformation, and excretion. [EU] Pharmacologic: Pertaining to pharmacology or to the properties and reactions of drugs. [EU] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of YEASTS. [NIH] Phenytoin: An anticonvulsant that is used in a wide variety of seizures. It is also an anti-arrhythmic and a muscle relaxant. The mechanism of therapeutic action is not clear, although several cellular actions have been described including effects on ion channels, active transport, and general membrane stabilization. The mechanism of its muscle relaxant effect appears to involve a reduction in the sensitivity of muscle spindles to stretch. Phenytoin has been proposed for several other therapeutic uses, but its use has been limited by its many adverse effects and interactions with other drugs. [NIH] Phosphorylation: The introduction of a phosphoryl group into a compound through the formation of an ester bond between the compound and a phosphorus moiety. [NIH] Photosensitivity: An abnormal cutaneous response involving the interaction between photosensitizing substances and sunlight or filtered or artificial light at wavelengths of 280-400 mm. There are two main types : photoallergy and photoxicity. [EU] Pilocarpine: A slowly hydrolyzed muscarinic agonist with no nicotinic effects. Pilocarpine is used as a miotic and in the treatment of glaucoma. [NIH] Piroxicam: 4-Hydroxy-2-methyl-N-2-pyridyl-2H-1,2-benzothiazine-3carboxamide 1,1-dioxide. A non-steroidal anti-inflammatory agent that is well established in the treatment of rheumatoid arthritis and osteoarthritis. Its usefulness has also been demonstrated in the treatment of musculoskeletal disorders, dysmenorrhea, and postoperative pain. Its long half-life enables it to be administered once daily. The drug has also been shown to be effective if administered rectally. Gastrointestinal complaints are the most frequently reported side effects. [NIH] Placebos: Any dummy medication or treatment. Although placebos originally were medicinal preparations having no specific pharmacological activity against a targeted condition, the concept has been extended to include treatments or procedures, especially those administered to control groups in clinical trials in order to provide baseline measurements for the experimental protocol. [NIH] Plasmapheresis: Procedure whereby plasma is separated and extracted from anticoagulated whole blood and the red cells retransfused to the donor. Plasmapheresis is also employed for therapeutic use. [NIH]
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Pneumonia: Inflammation of the lungs with consolidation. [EU] Podiatry: A specialty concerned with the diagnosis and treatment of foot disorders and injuries and anatomic defects of the foot. [NIH] Polyarthritis: An inflammation of several joints together. [EU] Polymorphic: Occurring in several or many forms; appearing in different forms at different stages of development. [EU] Postmenopausal: Occurring after the menopause. [EU] Postnatal: Occurring after birth, with reference to the newborn. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Precursor: Something that precedes. In biological processes, a substance from which another, usually more active or mature substance is formed. In clinical medicine, a sign or symptom that heralds another. [EU] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH]
Preeclampsia: A toxaemia of late pregnancy characterized by hypertension, edema, and proteinuria, when convulsions and coma are associated, it is called eclampsia. [EU] Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Probenecid: The prototypical uricosuric agent. It inhibits the renal excretion of organic anions and reduces tubular reabsorption of urate. Probenecid has also been used to treat patients with renal impairment, and, because it reduces the renal tubular excretion of other drugs, has been used as an adjunct to antibacterial therapy. [NIH] Procainamide: A derivative of procaine with less CNS action. [NIH] Prodrugs: A compound that, on administration, must undergo chemical conversion by metabolic processes before becoming the pharmacologically active drug for which it is a prodrug. [NIH] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU]
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Prolactin: Pituitary lactogenic hormone. A polypeptide hormone with a molecular weight of about 23,000. It is essential in the induction of lactation in mammals at parturition and is synergistic with estrogen. The hormone also brings about the release of progesterone from lutein cells, which renders the uterine mucosa suited for the embedding of the ovum should fertilization occur. [NIH] Prolactinoma: A pituitary adenoma which secretes prolactin, leading to hyperprolactinemia. Clinical manifestations include amenorrhea; galactorrhea; impotence; headache; visual disturbances; and cerebrospinal fluid rhinorrhea. [NIH] Prophylaxis: The prevention of disease; preventive treatment. [EU] Prostate: A gland in males that surrounds the neck of the bladder and the urethra. It secretes a substance that liquifies coagulated semen. It is situated in the pelvic cavity behind the lower part of the pubic symphysis, above the deep layer of the triangular ligament, and rests upon the rectum. [NIH] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH]
Prothrombin: Factor II. [EU] Proximal: Nearest; closer to any point of reference; opposed to distal. [EU] Psoriasis: A common genetically determined, chronic, inflammatory skin disease characterized by rounded erythematous, dry, scaling patches. The lesions have a predilection for nails, scalp, genitalia, extensor surfaces, and the lumbosacral region. Accelerated epidermopoiesis is considered to be the fundamental pathologic feature in psoriasis. [NIH] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Psychotherapy: A generic term for the treatment of mental illness or emotional disturbances primarily by verbal or nonverbal communication. [NIH]
Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Pulmonary: Pertaining to the lungs. [EU] Pulse: The rhythmical expansion and contraction of an artery produced by waves of pressure caused by the ejection of blood from the left ventricle of the heart as it contracts. [NIH]
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Purines: A series of heterocyclic compounds that are variously substituted in nature and are known also as purine bases. They include adenine and guanine, constituents of nucleic acids, as well as many alkaloids such as caffeine and theophylline. Uric acid is the metabolic end product of purine metabolism. [NIH] Quackery: The fraudulent misrepresentation of the diagnosis and treatment of disease. [NIH] Quinidine: An optical isomer of quinine, extracted from the bark of the Cinchona tree and similar plant species. This alkaloid dampens the excitability of cardiac and skeletal muscles by blocking sodium and potassium currents across cellular membranes. It prolongs cellular action potential, and decreases automaticity. Quinidine also blocks muscarinic and alpha-adrenergic neurotransmission. [NIH] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Reagent: A substance employed to produce a chemical reaction so as to detect, measure, produce, etc., other substances. [EU] Receptor: 1. a molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. a sensory nerve terminal that responds to stimuli of various kinds. [EU] Recombinant: 1. a cell or an individual with a new combination of genes not found together in either parent; usually applied to linked genes. [EU] Reconstitution: 1. a type of regeneration in which a new organ forms by the rearrangement of tissues rather than from new formation at an injured surface. 2. the restoration to original form of a substance previously altered for preservation and storage, as the restoration to a liquid state of blood serum or plasma that has been dried and stored. [EU] Rectal: Pertaining to the rectum (= distal portion of the large intestine). [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Reflective: Capable of throwing back light, images, sound waves : reflecting. [EU] Reflux: A backward or return flow. [EU] Refractory: Not readily yielding to treatment. [EU] Registries: The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers. [NIH]
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Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Retina: The ten-layered nervous tissue membrane of the eye. It is continuous with the optic nerve and receives images of external objects and transmits visual impulses to the brain. Its outer surface is in contact with the choroid and the inner surface with the vitreous body. The outer-most layer is pigmented, whereas the inner nine layers are transparent. [NIH] Rheumatoid: Resembling rheumatism. [EU] Rheumatology: A subspecialty of internal medicine concerned with the study of inflammatory or degenerative processes and metabolic derangement of connective tissue structures which pertain to a variety of musculoskeletal disorders, such as arthritis. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Saliva: The clear, viscous fluid secreted by the salivary glands and mucous glands of the mouth. It contains mucins, water, organic salts, and ptylin. [NIH] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH] Sedentary: 1. sitting habitually; of inactive habits. 2. pertaining to a sitting posture. [EU] Sedimentation: The act of causing the deposit of sediment, especially by the use of a centrifugal machine. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Serositis: Inflammation of a serous membrane. [NIH]
Glossary 365
Serum: The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. blood serum; the clear liquid that separates from blood on clotting. 3. immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Sigmoidoscopy: Endoscopic examination, therapy or surgery of the sigmoid flexure. [NIH] Sorbitol: A polyhydric alcohol with about half the sweetness of sucrose. Sorbitol occurs naturally and is also produced synthetically from glucose. It was formerly used as a diuretic and may still be used as a laxative and in irrigating solutions for some surgical procedures. It is also used in many manufacturing processes, as a pharmaceutical aid, and in several research applications. [NIH] Spectrum: A charted band of wavelengths of electromagnetic vibrations obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Spondylitis: Inflammation of the vertebrae. [EU] Stenosis: Narrowing or stricture of a duct or canal. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Subacute: Somewhat acute; between acute and chronic. [EU] Subclinical: Without clinical manifestations; said of the early stage(s) of an infection or other disease or abnormality before symptoms and signs become apparent or detectable by clinical examination or laboratory tests, or of a very mild form of an infection or other disease or abnormality. [EU] Sulindac: A sulfinylindene derivative whose sulfinyl moiety is converted in vivo to an active anti-inflammatory analgesic that undergoes enterohepatic circulation to maintain constant blood levels without causing gastrointestinal side effects. [NIH] Sunburn: An injury to the skin causing erythema, tenderness, and sometimes blistering and resulting from excessive exposure to the sun. The reaction is produced by the ultraviolet radiation in sunlight. [NIH] Symptomatic: 1. pertaining to or of the nature of a symptom. 2. indicative (of a particular disease or disorder). 3. exhibiting the symptoms of a particular disease but having a different cause. 4. directed at the allying of symptoms, as symptomatic treatment. [EU] Synergistic: Acting together; enhancing the effect of another force or agent. [EU]
Synovial: Of pertaining to, or secreting synovia. [EU]
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Syphilis: A contagious venereal disease caused by the spirochete treponema pallidum. [NIH] Systemic: Pertaining to or affecting the body as a whole. [EU] Tendinitis: Inflammation of tendons and of tendon-muscle attachments. [EU] Testicular: Pertaining to a testis. [EU] Tetanus: A disease caused by tetanospasmin, a powerful protein toxin produced by clostridium tetani. Tetanus usually occurs after an acute injury, such as a puncture wound or laceration. Generalized tetanus, the most common form, is characterized by tetanic muscular contractions and hyperreflexia. Localized tetanus presents itself as a mild condition with manifestations restricted to muscles near the wound. It may progress to the generalized form. [NIH] Tetracycline: An antibiotic originally produced by Streptomyces viridifaciens, but used mostly in synthetic form. It is an inhibitor of aminoacyl-tRNA binding during protein synthesis. [NIH] Thalidomide: A pharmaceutical agent originally introduced as a nonbarbiturate hypnotic, but withdrawn from the market because of its known tetratogenic effects. It has been reintroduced and used for a number of immunological and inflammatory disorders. Thalidomide displays immunosuppresive and anti-angiogenic activity. It inhibits release of tumor necrosis factor alpha from monocytes, and modulates other cytokine action. [NIH]
Thermoregulation: Heat regulation. [EU] Thrombocytopenia: Decrease in the number of blood platelets. [EU] Thromboplastin: Constituent composed of protein and phospholipid that is widely distributed in many tissues. It serves as a cofactor with factor VIIa to activate factor X in the extrinsic pathway of blood coagulation. [NIH] Thrombosis: The formation, development, or presence of a thrombus. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Tolerance: 1. the ability to endure unusually large doses of a drug or toxin. 2. acquired drug tolerance; a decreasing response to repeated constant doses of a drug or the need for increasing doses to maintain a constant response. [EU]
Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU]
Topical: Pertaining to a particular surface area, as a topical anti-infective applied to a certain area of the skin and affecting only the area to which it is applied. [EU]
Glossary 367
Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Transplantation: The grafting of tissues taken from the patient's own body or from another. [EU] Tricyclic: Containing three fused rings or closed chains in the molecular structure. [EU] Trypanosoma: A genus of flagellate protozoans found in the blood and lymph of vertebrates and invertebrates, both hosts being required to complete the life cycle. [NIH] Tyrosine: A non-essential amino acid. In animals it is synthesized from phenylalanine. It is also the precursor of epinephrine, thyroid hormones, and melanin. [NIH] Ultrasonography: The visualization of deep structures of the body by recording the reflections of echoes of pulses of ultrasonic waves directed into the tissues. Use of ultrasound for imaging or diagnostic purposes employs frequencies ranging from 1.6 to 10 megahertz. [NIH] Ureter: One of a pair of thick-walled tubes that transports urine from the kidney pelvis to the bladder. [NIH] Urinalysis: Examination of urine by chemical, physical, or microscopic means. Routine urinalysis usually includes performing chemical screening tests, determining specific gravity, observing any unusual color or odor, screening for bacteriuria, and examining the sediment microscopically. [NIH] Urinary: Pertaining to the urine; containing or secreting urine. [EU] Urogenital: Pertaining to the urinary and genital apparatus; genitourinary. [EU]
Urography: Roentgenography of a part of the urinary tract which has been rendered opaque by some opaque medium. [EU] Urology: A surgical specialty concerned with the study, diagnosis, and treatment of diseases of the urinary tract in both sexes and the genital tract in the male. It includes the specialty of andrology which addresses both male genital diseases and male infertility. [NIH] Vaccination: The introduction of vaccine into the body for the purpose of inducing immunity. Coined originally to apply to the injection of smallpox vaccine, the term has come to mean any immunizing procedure in which vaccine is injected. [EU]
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Vaccine: A suspension of attenuated or killed microorganisms (bacteria, viruses, or rickettsiae), administered for the prevention, amelioration or treatment of infectious diseases. [EU] Vasculitis: Inflammation of a vessel, angiitis. [EU] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Viruses: Minute infectious agents whose genomes are composed of DNA or RNA, but not both. They are characterized by a lack of independent metabolism and the inability to replicate outside living host cells. [NIH] Vitiligo: A disorder consisting of areas of macular depigmentation, commonly on extensor aspects of extremities, on the face or neck, and in skin folds. Age of onset is often in young adulthood and the condition tends to progress gradually with lesions enlarging and extending until a quiescent state is reached. [NIH] Warfarin: An anticoagulant that acts by inhibiting the synthesis of vitamin K-dependent coagulation factors. Warfarin is indicated for the prophylaxis and/or treatment of venous thrombosis and its extension, pulmonary embolism, and atrial fibrillation with embolization. It is also used as an adjunct in the prophylaxis of systemic embolism after myocardial infarction. Warfarin is also used as a rodenticide. [NIH] Withdrawal: 1. a pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) a substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU] Xerostomia: Dryness of the mouth from salivary gland dysfunction, as in Sjögren's syndrome. [EU]
General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): ·
Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna
Glossary 369
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Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna
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A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupinterna
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Dorland's Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna
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Dorland's Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna
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Dorland's Pocket Medical Dictionary (Dorland's Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618
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Melloni's Illustrated Medical Dictionary (Melloni's Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna
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Stedman's Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna
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Stedman's Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupinterna
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Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna
370 Lupus
INDEX A Abdomen ......45, 48, 73, 77, 85, 161, 189, 331, 342, 356, 365 Abdominal.....20, 189, 195, 196, 224, 329, 342, 358 Aberrant.......................................114, 122 Abortion ...............................162, 169, 339 Acetaminophen......................................35 Acidosis ...............................................180 Acne ............................110, 140, 218, 339 Adjuvant...............................................158 Adolescence ................145, 194, 339, 359 Aerobic ........................................218, 224 Alkalosis ..............................................180 Alleles ..................................................272 Allergen ...............................165, 170, 346 Alopecia.........................42, 116, 193, 346 Aluminum.............................................301 Amitriptyline .........................................218 Analgesic ......41, 43, 44, 45, 48, 180, 339, 346, 348, 351, 353, 356, 365 Anaphylaxis .........................................165 Androgens .....................................25, 148 Anemia ..............13, 14, 33, 149, 193, 350 Antibacterial.........146, 158, 171, 361, 365 Antibiotic .....146, 170, 262, 344, 349, 355, 365, 366 Anticoagulants .......................35, 155, 162 Anticonvulsant ....115, 262, 263, 343, 348, 360 Antigen ...35, 41, 105, 106, 110, 120, 121, 125, 142, 143, 157, 159, 165, 168, 169, 170, 340, 341, 344, 348, 350, 352, 355 Antimicrobial ........................................347 Antioxidant...........................................276 Anxiety.........................................174, 224 Arginine ...............................160, 308, 358 Arteries ....................19, 98, 195, 342, 345 Arthralgia .............................................136 Arthropathy ..........................................168 Arthroplasty .........................................108 Ascites .................................145, 189, 357 Aspiration.........................................73, 85 Assay...................................157, 158, 279 Atypical ................................................168 Auditory ...............................................273 Autoantigens................106, 116, 118, 126 Autoimmunity......106, 114, 116, 118, 122, 125, 165, 178, 202, 208 B Bile.......................189, 195, 196, 342, 353
Biliary .................................................. 189 Biochemical................................. 140, 340 Biopsy ...... 15, 16, 37, 71, 73, 82, 85, 138, 176, 191, 336 Bromocriptine...................................... 111 Bronchitis ............................................ 217 Bullous ................................................ 202 Bursitis .................................................. 31 C Calcification......................................... 301 Capsules ............................................. 297 Captopril...................................... 113, 300 Carbohydrate ...................... 243, 296, 349 Carcinoma........................................... 162 Cardiac... 43, 47, 109, 189, 195, 227, 263, 347, 350, 355, 358, 363 Cardiopulmonary ................................ 178 Cardiovascular ..... 33, 176, 188, 193, 210, 220 Carotene ............................................. 285 Catalase.............................................. 123 Cataract ........................................ 42, 344 Catheter .......................................... 72, 77 Cerebral ................................ 79, 163, 193 Cerebrospinal ............................... 80, 275 Chemotherapy .................................... 137 Chlorpromazine .................. 163, 169, 344 Clarithromycin ..................................... 158 Coagulation ....... 110, 162, 163, 170, 171, 308, 350, 366, 368 Colitis .................................................. 167 Collagen....... 44, 113, 141, 180, 201, 202, 345, 351 Concomitant........................................ 135 Conjugated............................................ 78 Constipation ........................................ 189 Constitutional ...................................... 159 Contraception ............................... 33, 220 Contracture ......................................... 277 Coronary ............... 90, 107, 163, 217, 220 Cortex ................... 44, 109, 142, 345, 351 Cortical.................................. 47, 109, 364 Criterion .............................................. 150 Cryopreservation ................ 110, 142, 345 Curative............................... 148, 308, 357 Cutaneous.... 32, 35, 36, 45, 46, 134, 140, 145, 176, 190, 204, 218, 223, 234, 272, 343, 354, 358, 360 Cyclophosphamide .... 19, 25, 69, 72, 74, 75, 76, 84, 86, 105, 111, 153, 210, 220 Cystitis ................................................ 191
Index 371
Cytokines .......................79, 119, 127, 276 D Degenerative ...47, 99, 180, 295, 358, 364 Dermatology ........................................193 Desensitization ....................................165 Diarrhea.................................17, 189, 294 Discoid ....... 11, 30, 32, 35, 149, 177, 179, 190, 218, 273, 274 Distal......99, 120, 197, 262, 348, 362, 363 Dizziness ...................................13, 14, 20 E Eczema................................................202 Edema ..13, 145, 180, 197, 204, 262, 290, 340, 347, 349, 357, 361 Electrolyte............145, 180, 195, 350, 361 Endocarditis...................15, 204, 219, 343 Endogenous ................119, 204, 274, 347 Enzyme.......113, 126, 130, 141, 142, 144, 276, 279, 300, 344, 347, 355 Eosinophilia .........................................274 Epitopes.......................................122, 151 Erythrocytes...........41, 158, 170, 340, 348 Esophagitis ..........................................189 Estrogens ................................25, 78, 148 Exogenous..104, 119, 141, 142, 158, 204, 343, 347, 348 Extracellular.........................................161 Extracorporeal .....................................166 Extraction.............................................219 Exudate ...............119, 142, 204, 347, 348 F Fatigue..11, 13, 18, 20, 21, 36, 53, 56, 77, 92, 177, 178, 195, 216, 220, 224, 341 Femoral .......................................108, 222 Friction ...........................................45, 354 Furosemide..................................263, 352 G Gadolinium ............................................80 Gastrointestinal...17, 33, 43, 48, 157, 175, 176, 177, 178, 189, 349, 365 Glomerular...........120, 153, 180, 192, 274 Glomerulonephritis ....... 37, 74, 119, 120, 153, 155, 166, 191, 192 Glucose ...............143, 243, 349, 353, 365 Glycine.........................................150, 151 Gonadal .......................................109, 112 Gout ...............................................45, 356 H Haplotypes...........................................129 Heartburn...............................................17 Hematocrit ...........................................350 Hematuria ............................................180 Hemiplegia...........................................277 Hemofiltration ......................................180 Hemorrhage.........................................189 Heparin ................................................110
Hepatic................................................ 189 Hepatitis ...................................... 189, 279 Heredity............................................... 179 Hernia ................................................. 189 Histocompatibility... 33, 83, 106, 107, 124, 132 Homologous................ 117, 140, 150, 340 Hormonal ...................... 12, 109, 110, 221 Hormones .. 18, 24, 25, 41, 43, 88, 98, 99, 109, 111, 144, 175, 178, 221, 223, 290, 340, 346, 348, 355, 363 Humoral .............................. 104, 116, 121 Hydralazine ........................... 34, 126, 151 Hydrocortisone...................................... 18 Hyperlipidemia .................................... 221 Hypersensitivity........... 169, 170, 340, 346 Hypertension...... 113, 162, 180, 192, 197, 221, 263, 355, 361 Hypnotic ........................................ 99, 366 I Idiopathic......... 44, 63, 121, 126, 351, 364 Immunity ... 19, 48, 76, 143, 170, 352, 367 Immunization . 44, 99, 116, 143, 159, 351, 352, 365 Immunodiffusion ................................. 116 Immunogenic ...................... 149, 150, 151 Immunosuppressant ..................... 45, 355 Immunotherapy................... 123, 170, 346 Incision.......................................... 44, 353 Indicative....................... 48, 204, 351, 365 Induction 41, 75, 123, 143, 308, 340, 352, 362 Infarction ............... 79, 163, 189, 308, 368 Infertility................... 63, 84, 141, 343, 367 Influenza ............................................... 21 Infusion ................................... 19, 72, 136 Ingestion ..................................... 135, 297 Insulin.................. 109, 143, 243, 349, 353 Interleukins.......................................... 224 Intermittent .................................... 84, 112 Interstitial............................... 45, 180, 356 Intestines............................................. 189 Intrathecal ............................................. 80 Intravascular ....................................... 163 Intravenous ..................... 19, 72, 112, 220 Invasive................................................. 77 Iodine .......................................... 144, 355 J Jaundice.............................................. 189 L Laminin ............................... 154, 155, 166 Lesion ................... 63, 120, 331, 349, 359 Ligament ..................................... 197, 362 Ligation ....................................... 121, 220 Lipoprotein .......................... 110, 143, 354 Lithium ................................ 180, 196, 354
372 Lupus
Lubrication ...............................34, 45, 354 Lumbar ..........................................80, 115 Lymphoma...135, 137, 139, 144, 162, 354 M Malabsorption ......................................189 Malignant .............137, 144, 169, 343, 354 Mania ...................................................329 Mediator...............................................161 Medullary .............................................180 Membrane ....... 15, 47, 99, 146, 170, 171, 196, 220, 232, 263, 353, 356, 358, 360, 364 Menopause..........................115, 220, 361 Mesenteric ...........................................189 Methimazole ........................................111 Methotrexate..................................19, 167 Microbiology ................................169, 342 Microscopy ..................................158, 192 Microspheres .......................................157 Mobilization............................................69 Molecular .......48, 99, 104, 114, 118, 143, 157, 186, 210, 227, 230, 237, 238, 308, 339, 350, 362, 363, 367 Monocytes .....45, 100, 120, 127, 356, 366 Mononucleosis.......................45, 151, 356 Morale....................................................22 Mucocutaneous ...................................189 Mucosa ...44, 45, 190, 196, 219, 308, 352, 354, 356, 362 Mutagenesis ........................................128 Mycoplasma ........................................159 Myocarditis ............................................15 Myositis..................................................32 N Nausea ..................................19, 112, 189 Neonatal .....12, 23, 33, 70, 189, 213, 223, 224, 225 Nephropathy ............................74, 85, 180 Nephrotic ...............................................74 Neural ..................143, 295, 331, 351, 359 Neuronal ................................................79 Neurons ...................................79, 98, 357 Neuropathy ..........................................329 Neutrophil ............................................299 Niacin...................................................295 Nucleosomes.......................114, 122, 150 O Oedema...............................................134 Ointments ......................................20, 359 Ophthalmologic....................................178 Ophthalmology ............................196, 357 Ornithine ..............................................302 Osteodystrophy ...................................180 Osteonecrosis................19, 105, 108, 222 Osteoporosis ....19, 29, 89, 105, 108, 115, 161, 168, 175, 220, 222
Osteotomy........................................... 108 Outpatients............................................ 86 Ovariectomy........................................ 124 Overdose ............................................ 295 P Pacemaker.................................. 227, 358 Pancreas............................. 143, 189, 353 Panniculitis.......................................... 279 Paralysis ............................. 329, 331, 359 Paranoia.............................................. 329 Parathyroid.......................... 109, 145, 359 Peptic .................................................. 189 Pericarditis .................................... 15, 149 Pharmacists .......................................... 22 Pharmacokinetics ................................. 91 Pharmacologic ............ 105, 108, 110, 123 Phenotype...... 34, 46, 113, 119, 120, 125, 360 Phosphorylation .......................... 106, 122 Photosensitivity..................... 35, 234, 272 Placebos ............................. 176, 196, 360 Plasmapheresis ............................ 69, 177 Pneumonia.................................... 14, 217 Podiatry............................................... 193 Polymorphic ................................ 107, 117 Postmenopausal ............... 25, 78, 87, 220 Postnatal ............................................. 225 Potassium .... 47, 136, 262, 263, 296, 348, 355, 363 Precursor ............ 146, 271, 290, 340, 367 Predisposition ............... 35, 152, 153, 164 Prednisone....... 18, 25, 70, 73, 86, 87, 91, 200, 220, 223 Preeclampsia ...................................... 220 Prenatal............................................... 225 Prevalence .... 32, 107, 162, 179, 222, 299 Probenecid.......................................... 158 Procainamide ........ 34, 126, 151, 163, 165 Prodrugs ............................................. 167 Progressive ........... 37, 140, 153, 262, 349 Prolactin ...................................... 141, 343 Prolactinoma....................................... 301 Prophylaxis ................................. 308, 368 Prostate............................................... 193 Proteins...... 24, 42, 70, 98, 120, 122, 123, 129, 150, 151, 160, 163, 209, 294, 296, 300, 341, 346 Prothrombin ................................ 163, 271 Proximal ...................... 142, 262, 346, 348 Psoriasis ............................................. 362 Psychiatric................................... 138, 176 Psychiatry ................................... 145, 362 Psychotherapy ...................................... 30 Psychotropic ......................................... 30 Pulmonary.. 162, 188, 189, 195, 308, 350, 368
Index 373
Pulse..............................19, 112, 136, 220 Q Quackery .............................................181 Quinidine .......................................34, 163 R Reagent ...............................................161 Receptor ...42, 79, 83, 111, 121, 122, 124, 125, 165, 168, 213, 341 Reconstitution..........................69, 76, 130 Rectal ....................................................84 Reflective.............................................235 Reflux ..................................................189 Refractory ........................................76, 90 Registries...............................................23 Remission....... 11, 36, 75, 138, 139, 146, 161, 179, 330, 363 Retina ............................18, 161, 308, 364 Rheumatoid ..33, 43, 45, 46, 88, 136, 151, 162, 181, 189, 202, 220, 262, 348, 349, 353, 356, 360 Rheumatology .........................26, 60, 203 Riboflavin.............................................294 S Saliva ...............................................33, 88 Schizophrenia........49, 329, 331, 359, 368 Sedentary ............................................221 Sedimentation............................16, 33, 90 Seizures..13, 48, 116, 135, 262, 263, 329, 343, 348, 360, 364 Selenium......................................278, 296 Serositis ...............................................223 Serum .......79, 90, 99, 109, 113, 123, 136, 151, 153, 155, 157, 166, 232, 275, 279, 301, 363, 365 Sigmoidoscopy ......................................84 Spectrum .....104, 106, 122, 149, 153, 211 Spondylitis .............................43, 181, 348 Stomach ............17, 18, 43, 161, 189, 349 Subacute .35, 43, 134, 190, 218, 273, 349 Subclinical .....................47, 105, 107, 364 Sunburn .................................................35 Symptomatic............20, 48, 108, 329, 365
Synergistic .......................... 126, 308, 362 Synovial ........................................ 99, 358 Syphilis.................................................. 15 T Tendinitis............................................... 31 Testicular ............................................ 193 Tetanus ............................... 234, 244, 366 Tetracycline................................. 347, 355 Thalidomide ........................................ 111 Thermoregulation................................ 294 Thrombocytopenia . 14, 19, 116, 149, 162, 164, 273 Thromboplastin ........................... 156, 163 Thrombosis ...... 109, 135, 162, 164, 206, 207, 308, 368 Thyroxine ............................................ 296 Tolerance ...... 90, 100, 107, 114, 126, 366 Topical ................ 105, 146, 223, 359, 366 Toxicity............................................ 75, 90 Toxin ................................... 100, 244, 366 Transplantation .. 25, 37, 69, 76, 106, 110, 180, 273 Tricyclic ............................................... 218 Tyrosine ...................................... 122, 123 U Ureter .................................................. 191 Urinalysis .................... 16, 37, 48, 88, 367 Urinary ... 48, 63, 109, 175, 180, 191, 195, 197, 234, 262, 346, 348, 352, 367 Urogenital.............................................. 33 V Vaccination ........................................... 21 Vaccine ......................... 48, 169, 339, 367 Vasculitis....... 14, 35, 109, 112, 181, 187, 189, 232, 233 Vertebral ............................................. 109 Viral....................... 44, 118, 159, 162, 352 Viruses .... 12, 54, 144, 221, 244, 355, 368 W Warfarin .............................................. 300 Withdrawal .................................... 19, 193
374 Lupus
