the lupus book a guide for patients and their families jun 2005

The Lupus Book: A Guide for Patients and Their Families, Third Edition DANIEL J. WALLACE OXFORD UNIVERSITY PRESS The Lupus Book This page intentionally left blank The Lupus Book A Guide for Patients and Their Families Third Edition DANIEL J. WALLACE, MD Cedars-Sinai Medical Center Clinical Professor of Medicine David Geffen School of Medicine at UCLA Los Angeles, California 1 2005 1 Oxford University Press, Inc., publishes works that further Oxford University’s objective of excellence in research, scholarship, and education. Oxford New York Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto With offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam Copyright ᭧ 1995, 2000, 2005 by Oxford University Press, Inc. Published by Oxford University Press, Inc. 198 Madison Avenue, New York, New York 10016 www.oup.com OxfordisaregisteredtrademarkofOxfordUniversityPress All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Oxford University Press. Library of Congress Cataloging-in-Publication Data Wallace, Daniel J. (Daniel Jeffrey), 1949– The lupus book : a guide for patients and their families / Daniel J. Wallace.—3rd ed. p. cm. Includes bibliographical references and index. ISBN-13: 978-0-19-518181-4 ISBN-10: 0-19-518181-6 1. Systemic lupus erythematosus—Popular works. I. Title RC924.5.L85W35 2005 616.7'72—dc22 2004057638 135798642 Printed in the United States of America on acid-free paper Contents Foreword to the First Edition by Henrietta Aladjem, vii Preface to the Third Edition, ix Preface to the First Edition, xi Part I Introduction and Definitions 1. Why Write a Book on Lupus? 3 2. What Is Lupus? 5 3. The History of Lupus, 9 4. Who Gets Lupus? 11 Part II Inflammation and Immunity 5. The Body’s Protection Plan, 17 6. The Enemy Is Our Cells, 26 Part III What Causes Lupus? 7. The Genetic Connection, 39 8. Environmental Villains, 43 9. Drugs That May Cause Lupus or Produce Flareups, 49 Part IV Where and How Can the Body Be Affected by Lupus? 10. History, Symptoms, and Signs, 59 11. Must We Draw Blood? 65 [vi] Contents 12. Reactions of the Skin: Rashes and Discoid Lupus, 69 13. Why the Aches? Arthritis, Muscles, and Bone, 78 14. Pants and Pulses: The Lungs and Heart, 85 15. Heady Connections: The Nervous System and Behavioral Changes, 104 16. The Head, Neck, and Sjo¨gren’s Syndrome, 121 17. What About Hormones? 127 18. The Impact of Lupus Upon the GI Tract and Liver, 133 19. Lupus in the Kidney and Urinary Tract, 144 20. The Blood and Lymphatic Systems, 152 21. Why Do Blood Clots Develop? 159 22. Lupus Through the Ages: Lupus in Children and the Elderly, 165 23. Is It Really Lupus? 170 Part V The Management of Lupus Erythematosus 24. How to Treat Lupus with Physical Measures, 183 25. You Can Help Conquer Lupus, 195 26. Taming Inflammation: Anti-inflammatory Therapies, 207 27. Big Guns and Magic Bullets: Disease-Modifying Drugs, 214 28. Other Options: Treatments Occasionally Used to Manage Lupus, 230 29. Fighting Infections, Allergies, and Osteoporosis, 236 30. Can a Woman with Lupus Have a Baby? 243 31. Economic Impact of Lupus in the United States and Disability Issues, 252 32. What’s the Prognosis? 255 33. New Therapies for Lupus and Future Directions, 261 G LOSSARY , 267 A PPENDIX Lupus Resource Materials, 275 I NDEX , 281 Foreword to the First Edition by Henrietta Aladjem Cofounder, Lupus Foundation of America Editor, Lupus World Watertown, Massachusetts As someone once said, the story of lupus is one that we should know more about. For patients who want and need information about their disease, who want to take charge of their lives in the face of illness, and who want the ability to carry on an intelligent discussion of treatment with their physicians, reading The Lupus Book is an important step. When I was first diagnosed with lupus in 1953, I scanned a few medical libraries for facts about the disease. It should have been relatively easy for me to turn up some information, since I had worked at Widener Library in Cam- bridge, Massachusetts, for several years and had an understanding of how such things were categorized. Yet the search originally yielded only a single book, published by the Finsteen Institute in Denmark, and this tiny publication dealt only with the worldwide prevalence of lupus and tuberculosis. I conveyed my dismay and chagrin at this lack of information to several reference libraries. It was apparent that few physicians were interested in writing about this disease, which had rather suddenly become my disease. Through all these years, I never came across a book about lupus written in language simple enough for patients to understand. As a matter of fact, medical jargon is becoming so complicated that even doctors are finding it hard to com- municate with one another. The lupus patient can easily become bewildered, suffering not only from the relentless attack of the disease, but also from the fear of death and dying and the lack of understanding about what this disease can and will do to a human life. Now, for the first time, The Lupus Book will describe to the patient in lay language the latest medical findings about this disease and the treatments de- signed to ameliorate it. Patients, their families, and their friends will benefit [viii] Foreword by Henrietta Aladjem from The Lupus Book, and so will nurses, social workers, pharmacists, dentists, and mental health workers or anyone else who wants to know more about it. Education of the medical community at large about lupus is of critical im- portance. We need to ease the burden of the rheumatologist and immunologist, who often do not have sufficient time to deal with the multisystem problems of their lupus patients. Such practitioners will have much more success dealing with informed patients who have confidence in their potential to help themselves and willingly comply with prescribed medications and treatments. Some health organizations, such as the Arthritis Foundation and the Lupus Foundation of America, have made attempts to educate the lupus patient. Each year, they mail thousands of easy-to-understand, well-researched educational pamphlets and medical papers to patients all over the world, in many different languages. However, The Lupus Book, with all the information one might need close at hand, will prove a blessing in that it summarizes and makes readable all the pertinent information in a single source. Today, there are hundreds, perhaps thousands of papers on immunology, au- toimmunity, and lupus, and there are quite a few books on the subject. As the clouds of darkness break and a highly promising blue sky illuminates the sci- entific horizon, patients everywhere are beginning to feel more hopeful. They are hoping for new cures, medications with less side effects, a better quality of life, and perhaps a cure in our lifetime, so that we can call an end to so much suffering and so many unnecessary deaths. Had there been a book like The Lupus Book when I had active lupus (fortu- nately, I have been in complete remission for 25 years), much suffering would have been spared, not only for myself but for my spouse and children as well. The Lupus Book is an important addition to the patient-oriented literature on lupus and takes its place alongside its sister textbook Dubois’ Lupus Erythe- matosus, by Drs. Wallace and Hahn. Preface to the Third Edition Nearly 100,000 copies of The Lupus Book have been sold since it first appeared in 1995. I have been overwhelmed by the number of faxes, E-mails, letters, and telephone calls to my office with constructive suggestions, comments, and in- quiries. In 2000, a revised and expanded edition to the original effort appeared, and this represents a new effort to keep up to date with this rapidly expanding field. Over 500 corrections, deletions, or additions recast this revision. New sections relating to disability, economic impact of the disease, biologics, new drugs, clinical indices, clinical trial methodology, adherence, and proactive treat- ment strategies are now included. Sections relating to inflammation and the causes of lupus have been significantly updated. I thank all of you who have read The Lupus Book and wish you a happy, healthy future. Los Angeles Daniel J. Wallace, MD November 2004 [...]... Rheumatology textbooks and lupus monographs are available at medical libraries, but the information in them is not presented in a way that patients and their families can easily understand The Arthritis Foundation and lupus support groups (e.g., The American Lupus Society and the Lupus Foundation of America) publish excellent pamphlets on various aspects of the disorder, but these are often superficial; they do... Many patients who are told they have SLE do not Some ten million Americans have a positive lupus blood screen (called antinuclear antibody, or ANA) but only about one million of these actually have SLE Since normal patients and healthy relatives of those with autoimmune disease can have positive tests for lupus, some physicians take the test results at face value and inform their patients (especially... Brock, Allan Metzger, M.D., Nancy Horn, my medical artist Terri Hoffman, Joan Bossert and the people at Oxford University Press, as well as my wife (and editor) Janice, and our three children, Naomi, Phillip, and Sarah Additional thanks are owed to my long suffering secretary, Amanda Trujillo, the Lupus Foundation of America (especially John Huber, Kerryn Coffman, and Judy Madwin), The American Lupus. ..This page intentionally left blank Preface to the First Edition I’m amazed at the number of lupus patients referred to me who have received only a cursory explanation of their disease and a brief discussion of its management They have no idea what to expect and therefore usually have many questions, some of which I cannot yet answer I have written this book for them and their physicians Rheumatology... RACE AND GEOGRAPHY The incidence of a disease is defined as the number of new cases per time period (e.g., year), whereas prevalence denotes the number of sufferers in the population In the United States, African Americans, Latinos, and Asians have a greater incidence of SLE than Caucasians The prevalence among African American women was estimated by Kaiser-Permanente to be 286 per 100,000 in San Francisco... and the elderly (Chapters 22, 23, 29, and 30) Next, we take up the treatment of lupus the physical measures we can take to combat the disease, the various medications, and the emotional support you will need from your family and physician (Chapters 24 to 28) Finally, future directions and advances soon to take place are detailed in Chapters 31 and 32 3 The History of Lupus ‘ Lupus ’ is the Latin... cells They remember what is foreign, go on to alert the body when a person reencounters a foreign substance, and formulate a response that protects the body Blood is carried to tissues by the arteries, and returns to the heart through the veins Blood components, cellular waste and debris, and other materials can also return by another system a chain of lymph nodes that starts in our toes and fingers and. .. rash of neonatal lupus is a selflimited process that disappears during the first year of life because the mother’s antibody gets ‘‘used up’’ and the baby cannot make more of it Children may develop SLE between the age of 3 and the onset of puberty This form of lupus is usually a severe, organ-threatening disease but fortunately accounts for less than 5 percent of all lupus cases The onset of lupus after... word for ‘‘wolf,’’ and it is common medical lore that the ‘‘butterfly rash’’ seen on the cheeks of many lupus patients is so similar to the facial markings of a wolf that our ancestors chose the name for this reason The technical name for the disease we know of as lupus lupus erythematosus— was first applied to a skin disorder by a Frenchman, Pierre Cazenave, in 1851, though descriptive articles detailing... Francisco A Hawaiian study showed that Asian women had three times the prevalence rate of SLE as compared with Caucasian women American Indians seem to have the highest prevalence of lupus ever reported, but the numbers surveyed were too small to confirm this trend Within these broad groupings, geography and racial characteristics may influence the prevalence of lupus For example, lupus is very rare on the African . Rheumatology textbooks and lupus monographs are avail- able at medical libraries, but the information in them is not presented in a way that patients and their families can easily understand. The Arthritis. health organizations, such as the Arthritis Foundation and the Lupus Foundation of America, have made attempts to educate the lupus patient. Each year, they mail thousands of easy-to-understand,. The Lupus Book: A Guide for Patients and Their Families, Third Edition DANIEL J. WALLACE OXFORD UNIVERSITY PRESS The Lupus Book This page intentionally left blank The Lupus Book A Guide for