The Lupus Book: A Guide for Patients and Their Families, Third Edition
Read The Lupus Book: A Guide for Patients and Their Families, Third Edition Online
Authors: Daniel J. Wallace
A Guide for Patients
and Their Families,
Third Edition
DANIEL J. WALLACE
OXFORD UNIVERSITY PRESS
T h e L u p u s B o o k
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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
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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
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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
Part II
Inflammation and Immunity
5.
The Body’s Protection Plan, 17
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
[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
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
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
33.
New Therapies for Lupus and Future Directions, 261
APPENDIX Lupus Resource Materials, 275
Cofounder, Lupus Foundation of America
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 communicate 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 designed 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 (fortunately, 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 Erythematosus
, by Drs. Wallace and Hahn.
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 treatment 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
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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 man-
agement. 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 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 not explain in detail the disease’s mechanisms or put therapies in their proper context. Several books have
appeared for the lay audience, but with one notable exception, they are either
outdated, describe personal struggles, or concern themselves with promoting
coping strategies. (The exception are the books by Henrietta Aladjem; the Ap-
pendix lists her publications and her foreword to this book precedes this pref-
ace.) Less comprehensive monographs by physicians have appeared.
As a physician who specializes in rheumatology and has a special interest in
lupus, I have tried to anticipate your questions with the most up-to-date information we now have on causes, prevention, cure, exercise, diet, and many other
important topics. This book is a distillation of my experience in treating over a thousand lupus patients.
The Lupus Book
is in many ways a lay companion to
Dubois’ Lupus Erythematosus
, which I coauthored with Bevra Hahn. This 955-page textbook contains well over eight thousand references and is considered one of the most comprehensive works on the subject. I have duplicated the organization and structure