Positive Options for Living with Lupus

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POL text Q6 good.qxp 8/12/2006 7:39 PM Page i Positive Options for

Living with Lupus

About the Author

Philippa Pigache has been a journalist and writer for more than thirty years, has written for local and national newspapers, women’s magazines, radio, and television, and is currently a freelance medical science writer.

She has contributed for twenty years to consumer health pages and to journals for health professionals and has won awards both for her medical journalism and for her fiction. She is currently the honorary secretary of the Medical Journalists’ Association and editor of their journal, the
MJA News
.

She has written consumer health books on arthritis and attention deficit hyperactivity disorder (ADHD). Her first book,
Living with Rheumatoid
Arthritis,
was commended in the 2005 MJA Open Consumer Book Awards. She has two children, three grandchildren, and three cats, lives in Sussex, England, and paints and gardens in her spare time.

Titles in the Positive Options for Health series
Positive Options for Antiphospholipid Syndrome (APS)
by Triona Holden

Positive Options for Children with Asthma
by O. P. Jaggi, M.D., Ph.D.

Positive Options for Colorectal Cancer
by Carol Ann Larson
Positive Options for Crohn’s Disease
by Joan Gomez, M.D.

Positive Options for Hiatus Hernia
by Tom Smith, M.D.

Positive Options for Living with Your Ostomy
by Dr. Craig A. White
Positive Options for Polycystic Ovary Syndrome (PCOS)
by Christine Craggs-Hinton & Adam Balen, M.D.

Positive Options for Reflex Sympathetic Dystrophy (RSD)
by Elena Juris
Positive Options for Seasonal Affective Disorder (SAD)
by Fiona Marshall & Peter Cheevers

Positive Options for Sjögren’s Syndrome
by Sue Dyson
Positive Options for Living with Lupus
by Philippa Pigache POL text Q6 good.qxp 8/12/2006 7:39 PM Page ii
Ordering

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POL text Q6 good.qxp 8/12/2006 7:39 PM Page iii Positive Options

for

Living with

Lupus

S e l f - H e l p a n d T r e a t m e n t

P h i l i p p a P i g a c h e

Copyright © 2006 by Philippa Pigache

First published as Living with Lupus in Great Britain in 2005 by Sheldon Press, SPCK, 36 Causton Street, London SW1P 4ST.

All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying and recording, or introduced into any information storage and retrieval system without the written permission of the copyright owner and the publisher of this book. Brief quotations may be used in reviews prepared for inclusion in a magazine, newspaper, or for broadcast. For further information please contact: Hunter House Inc., Publishers

PO Box 2914

Alameda CA 94501-0914

Library of Congress Cataloging-in-Publication Data
Pigache, Philippa.

Positive options for living with lupus : self-help and treatment

/ Philippa Pigache.

p. cm. — (Positive options for health series)

“First published as Living with lupus in Great Britain in 2005

by Sheldon Press.”

Includes index.

ISBN-13: 978-0-89793-487-9

ISBN-10: 0-89793-487-3

1. Systemic lupus erythematosus—Alternative treatment. 2.

Self-help techniques. I. Title.

RC924.5.L85P54 2006

616.7’7206—dc22

2006020290

Printed and Bound by Bang Printing, Brainerd, Minnesota Manufactured in the United States of America

9 8 7 6 5 4 3 2

First Edition

07 08 09 10

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Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1

Hints for the Reader

1: Recognizing Lupus . . . . . . . . . . . . . . . . . . . . . . . . . . .

4

The Multiple Personalities of Lupus

Relatives of Lupus

Presenting Symptoms: The Patient’s View

2: Who Develops Lupus, Where, and Why? . . . . . . . . . 14

Lupus Occurs Unevenly

Is It Serious, Doctor?

Lupus in Young Children

Lupus in Men vs. Women

Lupus in Older People

Lupus in History

3: The Causes of Lupus . . . . . . . . . . . . . . . . . . . . . . . . . 23

A Genetic Predisposition?

Will My Baby Get It?

Twin Studies

Vulnerable Markers

“Sometimes It’s Hard to Be a Woman”

It’s Not What You’ve Got, It’s What You Do with It That Counts Environmental Triggers and the Infection Connection The Wolf’s Domestic Cousins: Pets

Other Possible Environmental Triggers

4: Diagnosing Lupus, Part 1: In the Doctor’s Office . . . 37

Taking a History

Symptoms Detected in the Doctor’s Office

Diagnosis: Craft or Science?

5: Diagnosing Lupus, Part 2: In the Laboratory . . . . . . . 44

Inflammation: The Good News and the Bad

Immune System Malfunction

v

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v i

Po s i t i v e O pt i o n s fo r L i v i n g w i t h L u p u s
Messages in Blood

Other Signs, Other Diagnostic Techniques

The St. Thomas’ Criteria

6: Treating Lupus with Drugs, Part 1 . . . . . . . . . . . . . . . 56

The Problem of Polypharmacy (Taking a Lot of

Drugs at Once)

Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)

7: Treating Lupus with Drugs, Part 2 . . . . . . . . . . . . . . . 65

Antimalarial Drugs Are Antilupus

. . . and Now the Bad News

Corticosteroids

Doses and Delivery Regimen of Steroids in Lupus Treatment Immunosuppressive Drugs

Treating Drug Side Effects

8: Do-It-Yourself Lupus Management . . . . . . . . . . . . . . 76

“I Feel Tired All the Time”

“I Look Awful”

“Sometimes I’m So Depressed I Want to Die”

“Choosing What to Eat Has Become a Minefield”

A Lupus-Drug Diet

Are There No Alternatives?

Therapies That May Help

9: Seven Lupus-Like Conditions . . . . . . . . . . . . . . . . . . 89

Mixed Connective Tissue Disease (MCTD)

Sjögren’s Syndrome

Fibromyalgia

Libman-Sacks Endocarditis

Avascular Necrosis

Drug-Induced Lupus (DIL)

10: Lupus and Pregnancy . . . . . . . . . . . . . . . . . . . . . . . . 102

Queen Anne’s Story

Facing Up to the Risks

Lupus Drugs During Pregnancy

Risks to the Baby

Will the Baby Be All Right?

For Those Who Don’t Want to Get Pregnant

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C o n t e n t s

v i i

11: Foretelling the Future . . . . . . . . . . . . . . . . . . . . . . . . 111

New Drugs in the Pipeline

Experimental Treatments for Kidney Damage

And Now for Something Completely Different

Fundamental Research in Progress

In Closing

Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 120

Further Reading . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126

Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127

Lupus Research and Support Organizations

Lupus Organizations in Other Countries

Other Helpful Organizations and Websites

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131

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To my colleague and friend Tom Smith, who

held my hand on the wolf hunt.

◗ ◗ ◗

Important Note

The material in this book is intended to provide a review of information regarding lupus. Every effort has been made to provide accurate and dependable information. The contents of this book have been compiled through professional research and in consultation with medical professionals. However, health-care professionals have differing opinions, and advances in medical and scientific research are made very quickly, so some of the information may become outdated.

Therefore, the publisher, authors, and editors, as well as the professionals quoted in the book, cannot be held responsible for any error, omission, or dated material. The authors and publisher assume no responsibility for any outcome of applying the information in this book in a program of self-care or under the care of a licensed practitioner. If you have questions concerning your health, or about the application of the information described in this book, consult a qualified health-care professional.

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Introduction

What is lupus? Ask the medical experts and they will tell you that it is an
autoimmune disease.
Its full name is
systemic lupus erythematosus,
or SLE, though we will be referring to it as “lupus” for short. The

“systemic” indicates that it affects many organs—the whole system.

The “erythematosus,” from the Greek word for “red,” describes a certain kind of rash and refers to the part of the body most noticeably affected in lupus: the skin. Until the nineteenth century, lupus was thought of only as a skin disease. In fact, the name was almost certainly applied to other diseases affecting the skin on the face, not to what we know as lupus today.

“Lupus” is Latin for “wolf.” The name of the disease was coined seven centuries ago by medieval physicians Rogerius and Paracelsus to describe facial lesions that ate into the skin and looked like a wolf bite. These days, doctors think it more likely that such lesions were caused by a form of tuberculosis rather than by what we now call lupus. In the past SLE was also sometimes called lupus vulgaris, or common lupus. This was to distinguish it from a slightly different kind of rash: discoid lupus, so called because its main symptom was raised circular discs. It is now considered to be a different version of SLE.