RHEUMATOID ARTHRITIS PLAN TO WIN This page intentionally left blank RHEUMATOID ARTHRITIS PLAN TO WIN Cheryl Koehn Taysha Palmer John Esdaile, M.D. OXFORD UNIVERSITY PRESS 2OO2 OXPORD UNIVERSITY PRESS Oxford New York Athens Auckland Bangkok Bogota Buenos Aires Cape Town Chennai Dar es Salaam Delhi Florence Hong Kong Istanbul Karachi Kolkata Kuala Lumpur Madrid Melbourne Mexico City Mumbai Nairobi Paris Sao Paulo Shanghai Singapore Taipei Tokyo Toronto Warsaw and associated companies in Berlin Ibadan Copyright © 2002 by Cheryl Koehn, Taysha S. C. Palmer, John H. Esdaile, M.D. Published by Oxford University Press, Inc. 198 Madison Avenue, New York, New York, 10016 http://www.oup-usa.org Oxford is a registered trademark of Oxford University Press 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 Koehn, Cheryl. Rheumatoid arthritis: plan to win / Cheryl Koehn, Taysha Palmer, John Esdaile. p. cm. ISBN 0-19-513056-1 (cloth) 1. Rheumatoid arthritis—Popular works. I. Palmer, Taysha. II. Esdaile, John. III. Title. RC933. .K64 2001 6i6.7'227—dc21 2001032165 Dose schedules are being continually revised and new side effects recognized. Research into other aspects of health care and wellness are also ongoing. Oxford University Press and the authors make no representation, express or implied, that the medications and dosages outlined in this book are correct. For these reasons, readers are strongly urged to consult their physicians and the pharmaceutical company's printed instructions before taking any medications, and also before undertaking exercise programs or following other recommendations made in this book. Book design and composition by Susan Day. 987654321 Printed in the United States of America on acid-free paper This book is dedicated to my co-author and dear friend, Taysha, and to my darling husband, John, whom I adore. -CLK For Cheryl, who conceived this book; For Abby, who gave birth to my joy; and For Sharon, with love and gratitude for all that she is, and all that she has helped me to become. -TCP In memory of J. Michael Esdaile. -JME This page intentionally left blank CONTENTS Foreword Dr. Matthew H. Liang ix Acknowledgments xi Prologue Thriving with RA xiii A message from Cheryl Koehn, coauthor of PLAN TO WIN and person with RA Chapter 1 PLAN TO WIN 3 Chapter 2 The Facts About Rheumatoid Arthritis (RA) 11 • What causes RA • Symptoms and signs: pain, inflammation, stiffness, fatigue • How RA attacks joints • The effects of RA in other parts of the body • How RA is diagnosed Chapter 3 Your Health Care Team 29 • Becoming the leader of your own health care team • The role of doctors, internists, rheumatologists, surgeons • Roles of health professionals: occupational therapists, physical therapists, nurses, social workers, counselors • Complementary and alternative medicine Chapter 4 Medications 51 • Making informed decisions • Why rheumatologists recommend early medication therapy • Fear of side effects • A comprehensive guide to RA medications: their names, what they do, how and when they work, their side effects, and how they are monitored (includes NSAIDs, DMARDs and the new biologies) • Research on new medications Chapter 5 Exercise 97 • The role of exercise in managing RA • Getting started and setting goals • Guidelines for exercising safely with RA • Exercises to keep you mobile, strong, and fit viii CONTENTS Chapter 6 Diet, Nutrition, and Complementary and Alternative Medicine 113 • The role of diet and nutrition in RA • Calcium, vitamin D, and omega-3 fatty acids • An overview of unproven diets and complementary and alternative medicine Chapter 7 The Mind-Body Connection 127 • Do emotions, beliefs, and attitudes affect health? What the research shows • Eight ways to use the mind-body connection to manage RA, and why they work • Mind-body practices that support health Chapter 8 Relationships and Sexuality 153 • How RA can affect relationships with spouses, colleagues, children, friends, and family members • Helpful and unhelpful kinds of support • Tips on communicating and dealing with anger • Sexuality and RA • A special message for spouses and partners Chapter 9 Work, Family, and Leisure 171 • Getting to the root of challenges posed by RA • How to adapt the problem task, protect joints, and make optimal use of energy • Practical tips on self-care, employment, and caring for home and family Chapter 10 Surgery 191 • Surgery when the time is right • Preparing for surgery • Life after surgery • Types of surgery Chapter 11 Pregnancy, Childbirth, and Menopause 205 • The effects of pregnancy on RA • Best odds for a healthy pregnancy • Medications during pregnancy • Disease activity after the baby is born • Breast-feeding • Caring for baby • The pill • Menopause Chapter 12 More Resources 221 • Associations representing people with RA • Books, professional journals • Aides to daily living and arthritis products • The Internet: Worthwhile sites and newsgroups; Where to find reliable information on current treatment therapies, RA research, and clinical trials Notes 241 Index 259 FOREWORD This book is a fine pearl. I will recommend it to my patients, their families, and to their health care providers. It is the only book about rheumatoid arthritis written by a person with it, a physician, and a medical writer. As such, it is a poignant, understandable, calm guide for what to expect and how to prevail. Life deals a hard hand to some individuals, which they neither deserve, nor in many instances can control. For most people with rheumatoid arthritis, it is a lifelong journey and, I believe, an experience that brings spe- cial insights about oneself, what is important in life, and draws out and on all of one's inner resources. I first met Ms. Koehn at a landmark meeting organized by The Arthritis Society in the shadow of the Canadian Parliament. It was the first attempt to bring together the many persons and organizations concerned with these disorders, but it became a forum for lament and blame. That all changed when Ms. Koehn, who was in the audience, stood up and gave an impas- sioned plea that changed the course of the meeting and, as history subse- quently showed, the course of Canadian rheumatologic care. I suspect this book will have the same kind of positive impact on individuals with rheumatoid arthritis. It is a comprehensive and thoroughly researched book that will help patients, their families, and their providers to negotiate the vagaries of a waxing waning illness in which the issues of the moment need to be solved with a view to the future. There are many self-help books, but there are none that deal realistically, accurately, and emotionally with the many issues that confront the person with RA. The result—this gem—is the gist of a conversation between a spe- cial, wise physician who is an expert about what's known and not known; a