Customer Reviews

The Lupus Book: A Guide for Patients and Their Families

5 star:		(51)
4 star:		(1)
3 star:		(0)
2 star:		(2)
1 star:		(0)

 

 

The Lupus Book offers detailed information about lupus that is helpful for the newly diagnosed patient or, like my mother, for a lupus survivor of more than 20 years. It has become a "lupus Bible" for my mother and me, even after all the books we've read about lupus over the last 25 years. The book includes example anecdotes, useful information on treatments, and VITAL clinical information for each body system involved. Another Amazon.com customer recommended this book, and I am so grateful--we discovered a life-saving diagnostic procedure through this book that my mother's doctors had not intended to run. If you think you're getting the best care possible for your lupus, read this book and be certain of it. I can't recommend this book highly enough--it is quite literally life-preserving information for the chronically ill lupus patient.

I have had lupus for at least 20 years and have been diagnosed for 12 of those years. I have a good amount of knowledge of the disease and have been professionally employed as a health educator for rheumatic diseases in the past. I have also been a rheumatic diseases support group leader since 1986.

But what good is knowledge when you are too ill to use it? People who have the symptom of severe fatigue, as well as those who share my experience with lupus cognitive impairment problems, will understand what I mean.

I was having shortness of breath and knew that trouble breathing is big trouble. I was being treated in a managed care setting with antibiotics. I had also been taken off my medications to see if drug allergies were causing breathing problems, and it was proposed that this be tried again even though I only got sicker the first time. I was told I might have acute lupus pneumonitis and when I saw some of my own test results I knew this is what I had. But I wasn't sure what to do about it! My steroids were being decreased and I was getting worse.

A paragraph in Dr. Wallace's book leapt out at me, telling me that (page 85) "If it is properly managed with high doses of steroids, [acute lupus pneumonitis] can be completely reversible...Despite this, it is unfortunate that up to 50 percent of patients with ALP die within months, often due to a delay in diagnosis". Well, folks, I happen to know Dr. Wallace and hightailed to Beverly Hills to see him ASAP. I did have ALP and I would have been in a box underground soon enough if I didn't get treatment, which obviously I did or I wouldn't be here writing this review.

Enough said! Get the book.

I have recommended this book to numerous people to help them understand their illness better. Dr. Wallace has written this book in terms that a lay person can understand, but never 'talks down' to the reader. This book is an excellent tool for arming oneself in being their own patient advocate. The information can allow you to converse with your heath care provider, working with them to achieve the best care for you. Having read many books about this disease which I have had for the last 10 years, I am pleased with the extensive coverage of the many symptoms and ways that lupus can manifest itself. A very helpful and useful book.

My Rheumatolgist recommended this book and I finally took his advice. This is the most comprehensive, easy to understand book on lupus I have ever read.. AND most importantly, it is not depressing. I feel empowered after reading this book. The section on lab results is very informative..I would recommend this to anybody curious about lupus.

I was just diagnosed this year with lupus and let me tell you, I was reading everything I could on lupus and when I ordered this book and read it in less than 1 day I felt so much better about my disease because this book helps you understand it, it is clear and concise. I feel after reading this book that I have at least better understanding and that is what we all need. I have passed the book onto my family members to read as well. VERY informative book.

This is simply the best book on the market for patients with various kinds of lupus, people who suspect they may have lupus, and those who love them.

Written by one of the foremost rheumatologists in the world, and a noted expert in the field, this book covers everything from what is known about the causes of the various types of lupus to why it is difficult to diagnose the disease, on through the biochemistry of the disease, its manifestations and symptoms, the possible treatments for them, and the probable outcome of those treatments. It even discusses the options for lupies: what about pregnancy, for example?

For a lupus patient, this is a must-read at diagnosis, and a faithful friend thereafter, as this fickle disease morphs into various different forms over time. It is also surprisingly reassuring for the new patient, who may have read outdated materials suggesting that a five-year survival rate is to be expected (it is not).

The book, like its author, is careful and caring, but it assumes an intelligent reader and does not patronize. Anyone who doesn't want to read the technical explanations (why are C3 & C4 levels important?) can skip those parts, but the long-term patient will find him or herself going back to them eventually. The patient who reads and understands this book will also be in a far better position to advocate for him or herself with any rheumatologist, and to understand the tests that are inevitably run both to diagnose the illness and to detect its severity at any given time.

The only more thorough book on the market on this subject is a textbook, "Dubois Lupus," edited by Daniel Wallace and Bevra Hahn.

I found this volume invaluable even before I became one of Dr. Wallace's long-term lupus and FMS patients, and I can vouch for its usefulness. One of the few patient guides out there truly worth the money. If you're going to buy one book, and if you have lupus or know someone well who does have it, you should: buy this one.

Eight years ago I was diagnosed with discoid lupus. Two weeks ago the disease transitioned to my kidneys creating an entire new situation for me to deal with... Having The Lupus Book as reference, allowed me to re-acquaint myself with things I knew and learn about this latest manifestation. For most of us, lupus is chronic & ongoing. A book like this will travel as your companion if/when your disease takes a different form. Sensitive and intelligent - this book is a truly caring guide for anyone coping with a changing illness.

If you wish to know about what is actually going on in your body with this disease, this is the book for you. Many other books about Lupus teach you how to live with the disease and that's good. But I wanted to know in detail what the heck was going on in my body, what to watch for, what drugs and treatments I might try and how they would affect me. This book covers all that in detail. This book might be a bit too technical for some, but I didn't have any trouble understanding it. Rhuematologists are few and far between, and really good ones are even harder to find. The author of this book is very knowledgeable and experienced. It's good to have "him" by my side, to supplement my own local Rhuematologist as I continue this journey.

A very comprehensive book that covers different organ systems that lupus can affect. The information is updated and enables the readers to discuss intelligently with theirs doctor about the symptoms and treatments. The author successfully conveys complex medical information in layman terms. The book is rich in contents but should not be difficult to understand for anyone. All lupus patients and their familities should add this book to their lupus literature collection.

I have the 1996 one, and got the new one last night. Read it entirely. It's full of very useful new information, such as splitting the peripheral nervous system out from the central NS. Up to date lab work, expanded medications section. It's very much worth while. You will recognize some sections as lifted bodily from the old version, but it really is revised and expanded, well worth your dollars!