Coping with Prednisone and Other Cortisone-Related Medicines

by Eugenia Zukerman, M.D. Ingelfinger, Julie R.

Approximately one million Americans per year take high doses of prednisone and related drugs. While these medicines may be necessary to treat serious illnesses, they may also have unpleasant, and even devastating, side effects, including changes in mood, weight, and physical strength, and vulnerability to infection.

In 1997, after acclaimed flutist Eugenia Zukerman was prescribed prednisone for a rare lung disease, she teamed up with her sister, Harvard physician Julie Ingelfinger, to write the first book that helps patients deal with the side effects of the prescription.

This welcome update to a superb resource—which is still the only book on the subject— covers the latest knowledge about bone health, the use of steroids for children, and new steroid compounds, along with additional strategies and exercises based on their own experiences and responses from other patients and physicians.

Genres: Nonfiction, Medical, Self Help

257 pages, Kindle Edition

First published July 15, 1997

Reviews

[Peggy Smith · Rating 2 out of 5]

I shouldn't, but sometimes when I think about this book I get angry. I read it a long time ago, but even then I had been on the drug longer than she had. The author refers to her use as "long-term" when it was less than a year. I don't believe you can truly understand what "coping with prednisone" is like unless you've been on it for at least five years or more. So many of us are on it for life. The side effects that I deal with now - over a decade later - are much different than those that bothered me in the beginning. Maybe I wouldn't be so hostile if the title was Coping with Short-Term Prednisone Use.

The truth is prednisone is a miracle drug - it saved my life. But it's also a curse. It's caused at least as many problems as it has solved. But there is no choice. Either I live with the side-effects, or I die. And the worst side-effects are not weight gain or a moon face - although I've got both of those and don't enjoy either. The worst, for me, is that I am covered head to toe with bruises and if I accidentally bump something the wrong way my skin tears. I'm not even fifty and yet my skin looks like it belongs to someone at least 80 years old. If I step the wrong way, the tendons in my feet tear. I have rods in the bones of my feet because of broken bones that I don't even know how I broke. I have glaucoma. I will also be on anti-depressants the rest of my life to combat the mood swings caused by the prednisone. And there are plenty of other people on prednisone who have it worse than I do. Plenty.

I wish someone would write another book - one for those of us who have to take it indefinitely. I think about it sometimes.

[Carol · Rating 4 out of 5]

I bought this book when I was diagnosed with a lung disease and put on high doses of Prednisone. It helped me cope with a lot of the side effects and made me aware of what to expect. The book also had diet suggestions to help ease some of the side effects and the weight gain.

The downside is that I will be on Prednisone for the rest of my life and the book is not really helpful to people who take Prednisone on a long term basis. It was also a little annoying that the author was very whiny about having to take Prednisone for only 10 months, instead of the years that others have to endure.

[Dee Dee Walker · Rating 4 out of 5]

I really appreciate any book that is written to help users or prednisone. Although there was not much scientific facts in this book I found the personal emotional vulnerability of this book. Getting fat is not the only problem with prednisone. It also makes you an emotional mess. It was comforting to know I wasn’t the only on who was emotional. When I first started my med high dose. I had notice I was crying every day. And getting angry at the drop of a hat. This book shares also information on what they tried diet wise to keep the weight under control. I personally prefer the keto diet myself. I think this book is great if you just want to hear another person personal story with taking very high doses of prednisone.

[Marie · Rating 1 out of 5]

Apparently, the way you cope with prednisone is you go off it after 2 years. For those of us condemned to a lifetime of pred usage, this book offers no assistance.

[Lisa · Rating 5 out of 5]

A must read for anyone taking prednisone! It's a shame the doctors who prescribe the drug don't recommend this book particularly when most of them do not mention all the side effects.

[Abi Kyea · Rating 4 out of 5]

Helpful insight on mental effects

This book provided helpful insight on the side effects of high dose Prednisone, especially the mental effects. For our family, these side effects in particular were downplayed and hardly discussed, even when we asked about behavioral/personality changes in our 4-year old son, who had to be on high dose steroids for almost a year to manage his kidney disease. This period of time on steroids was indescribably hard, for not only our son but our whole family. Though I wish I'd read this book during that time, it was still valuable in helping process that experience, and makes me feel more understanding and mentally prepared for inevitable relapses and resultant high doses for him again. This book in particular is certainly only one patient's perspective (as she caveats several times) but it is one of few resources for folks going through high dose Prednisone (and their support systems). It is well written and I certainly appreciate that it exists.

[C.C. Yager · Rating 4 out of 5]

I remember when Eugenia Zukerman was married to Pinchas and they were a power couple in classical music. In the 1990's, Eugenia developed an autoimmune lung disease and her pulmonologist put her on high dose prednisone as the treatment. The thing about prednisone: it works beautifully to stop autoimmune inflammation, but it has many nasty side effects. Zukerman was rightly concerned about being on this powerful drug, but she could not find any books that addressed her concerns. So, she decided to write one, and she enlisted her doctor sister (as she did during her treatment to help her understand what was happening to her) to address the physician point of view.

Zukerman and Dr. Ingelfinger do an excellent job, especially in addressing the most common side effects, and the psychological side effects that can occur. I learned so much, as well as finding affirmation for my own experiences on prednisone. It is a commonly used corticosteroid. Most people don't realize the adrenal glands in the human body produce this steroid naturally, but not enough to stop autoimmune inflammation. One thing that happens when a person starts prednisone, especially at a high dose, is the adrenal glands stop producing it naturally. The normal hormone loop between the pituitary gland and the adrenal glands is shut down. So, that's the reason it's so important to taper off prednisone, and do it slow enough by individual to allow the body's hormone loop between pituitary and adrenals to kick in and begin producing it naturally again. When that doesn't happen, withdrawal from prednisone can cause serious symptoms.

I was especially interested in the diet experiences Zukerman had and her recommendations for eating while on prednisone. Now I understand why I gained so much weight while on it last year. I caved in to the cravings for salt and carbs. With Zukerman's guidance from this book, I've changed my diet and have begun to lose some weight. She points out often that each person's experience on prednisone will be unique, but there are certain effects that most people experience to some extent. Food cravings and a rampaging appetite is one.

Written clearly, in easily understood language, and with a personal voice from Zukerman, this book was an easy, helpful read. I'm really grateful to Zukerman and her sister for sharing their experience with others and putting this book out there. I highly recommend it for anyone who's been on prednisone or has just begun taking it for the first time (or any other corticosteroid).

[s_evan · Rating 4 out of 5]

although not the best writing, a wonderful narrative of a woman who has a voice, thanks in part to her sister and co-author who happens to be medical doctor. a great example of an illness narrative (about the side effect of a medication, no less) and showing the struggle and a balanced approach towards health of pushing her body and listening to her body and fighting a chronic illness.

[Debra · Rating 5 out of 5]

This is the best source of information I've ever found regarding Prednisone. It's written by sisters with two points of view, since one was on high-dose Prednisone and the other is a physician. Even though I've been on this drug countless times, I learned quite a bit. I've enthusiastically recommended this book to several people as the definitive authority on Prednisone.

[Susan · Rating 5 out of 5]

This book is a must-read if you're on long-term prednisone therapy. Even if you're already aware of the myriad (and fun!) side effects, it's comforting to read of someone else's experiences.

[Emily · Rating 4 out of 5]

An enjoyable and informative read! I was already aware of many of the side effects of prednisone, but I still learned a lot.

[Shanni · Rating 4 out of 5]

I got put on a long (but hopefully not permanent) course of Prednisone for a lung condition, and felt really helpless and frustrated because my doctors were really unhelpful in advising me about the side effects of this terrible drug and how to deal with them. This is the only book I could find dealing with this topic in an in-depth manner. It's written by a patient and her sister who is a medical doctor, so the book goes back and forth between the two perspectives. Although some people may find the patient perspective a bit too memoir-like, I found it helpful since it's reassuring to hear the experience of someone who went through something similar. The only part of this book I find lacking is the section on tapering and withdrawal. I would have liked to see more information about the various types of tapering protocols that are used. This is known to be one of the most difficult parts of using Prednisone, so it really needed more in depth discussion. Overall, a pretty good resource for anyone who has to use Prednisone for longer than two weeks.

[Lynn Cornwell · Rating 4 out of 5]

I've been having some medical issues and was working with a rheumatologist to see if I had an autoimmune disease. While I was waiting for the test results, I read this book so that I would be more knowledgeable if I had to go down this path! Wow--the book was really an eye-opener for me about how complicated and frustrating it can be to be on Prednisone long-term! I thought the two sisters, one a patient and the other a doctor, did a fantastic job of giving me an interesting story and some medical insight and detail! It turned out that my test results were great and I don't have any of these issues. However, I was extremely grateful after reading about Eugenia's struggles! I greatly appreciate that they took the time to write the book to be helpful to others!!

[Sara · Rating 4 out of 5]

Good book to get some answers. I have been on prednisone for 6 months and was never told all of the crazy side effects you can get being on it.

[Jaime Roman · Rating 5 out of 5]

A little more than a year ago I was diagnosed with myasthenia gravis. A neurological disorder I had never even known. I was post surgical prostate cancer and that, at my age of 65, I understood and accepted as just a part of life. For the myasthenia I was prescribed a drug, Mestinon, that worked great...for one year. I joined an online support group and read the angst of others with MG and prednisone. With Mestinon no longer working as it initially did, my neurologist indicated that prednisone was the next step and that it could well put my ocular MG in remission. I balked and negotiated for a more frequent administration of Mestinon. He agreed provided I had no side effects. Well, that lasted a day. Anticipating that I would now have to take prednisone, I turned to whatever literature I could find. In reading the reviews by others who have been on prednisone for an extended period, I understand their reactions to the author. But for someone like myself who has never had any awareness of prednisone and only anecdotal references by others of its side effect, the book was invaluable. The book was an easy read. It was at times self-serving but also a self-awakening for this woman who found herself in an unenviable situation. It helped me in the calculus of factors I am considering re prednisone and its administration and the potential side effects. I came away with more than I knew...and no author can ask for more.