Prednisone Book

[Pete]

I just finished reading Coping With Prednisone by Eugenia Zuckerman and Julie Ingelfinger,MD, New York, St. Martin's Griffin, 2007. The authors are sisters. Ms. Zuckerman had eosinophilic pneumonitis and was treated with varying dosages of prednisone to ultimately cure her disease.

This book provides a good overview of side effects and how one may feel when side effects are present. The book also provides guidance regarding diet, exercise, and working with doctors who prescribe this drug. The authors have also included recipes for low salt, low fat dishes. There is a good bibliography for further research.

The book is available at Amazon.com for about US$12.00.

[drz]

What changes do you think you might make after reading the book? What info or advice did you think was most important or helpful?

[Pete]

What changes do you think you might make after reading the book? What info or advice did you think was most important or helpful?

For me, the big changes will be dietary. I'm paying more attention to the sodium/salt content of food and not using salt at the table or when I cook. Also, I'll have to be more diligent about curbing my sweet tooth. I also plan to ramp up the exercise in earnest. I've been goofing off on it all summer because it's been so hot here.

[gwenllian111]

Interesting.

The biggest thing for me and pred, is the depression and anxiety. I find it utterly overwhelming.:crying:

[Dirty Don]

The biggest thing for me and pred, is the depression and anxiety. I find it utterly overwhelming.:crying:

I'm on Lexapro, it does counteract the d&a...works well.

[gunnyl]

My Rheumy is transitioning me to Plaquenil to replace the Prednisone. Supposed to have less side effects than the Pred. My Ophthalmologist was happy that I was being switched and she told me that Prednisone scares the hell out of her because it can be way more damaging to you than the Plaquenil. Predinosone taken for long periods of time can cause both Cateracts and Glaucoma not to mention that it can cause progressive heart disease and many other systemic problems. While it's good in the short run, it can be a bad thing if taken for long periods of time.

[Dirty Don]

Out of curiosity, what is a 'long time' on pred? 1 year, 2 years...???

[gunnyl]

I'm not sure Don! I've been on for a Year and my Doctors were getting uneasy about it........Especially the Ophthalmologist! But my Rheumy seemed pretty interested in getting me off too....She said it's very effective but she was uneasy keeping me on it any longer.....

GL

[KathyB]

I'm at one year ... Started at 90 mg and have been sitting at 5 mg for 6 months. I have an appt with my rheumy on the 24th to discuss this. But I've only had Rtx and am on no other maintenance meds. Not sure if that makes a difference.

KB

[pberggren1]

I've been on pred for almost 5 years now. Might never get off it. I know of others that have been on it over 20 years.

[drz]

I've been on pred for almost 5 years now. Might never get off it. I know of others that have been on it over 20 years.

Been on Pred for 2 1/2 years and I also might be one of the lucky ones that gets to continue on it indefinitely. My doctors say that at lower dosages there are still adverse effects that accumulate over time but they say these are generally less than the risks of going without any. Like most meds there is a balancing act of costs versus benefits.

[Pete]

Don't know much time is a long time, either. I've been on pred for a year-and-a-half. Was tapering until my new wegs doc switched me from cytoxan to methotrexate. I seem to be tolerating mtx reasonably well, so I'll raise the question of resuming the pred taper when I see her on 9/26.

[Sangye]

None of my docs (including endocrinologist, ENT, neuroopthalmologist and Wegs doc) is worried about staying on pred at 5 mg or lower indefinitely. They basically consider that harmless. The biggest risks are at doses higher than that. Even 10 mg for several years can cause major problems.

From a holistic view I would say that no dose of prednisone is harmless for extended periods of time. Not everyone has the choice to go off it though.

I've heard the book is pretty good and does echo what I've learned myself: that sugar, salt and fatty food are the worst things to eat when you're on higher doses.

[drz]

None of my docs (including endocrinologist, ENT, neuroopthalmologist and Wegs doc) is worried about staying on pred at 5 mg or lower indefinitely. They basically consider that harmless. The biggest risks are at doses higher than that. Even 10 mg for several years can cause major problems.

From a holistic view I would say that no dose of prednisone is harmless for extended periods of time. Not everyone has the choice to go off it though.

I've heard the book is pretty good and does echo what I've learned myself: that sugar, salt and fatty food are the worst things to eat when you're on higher doses.

Any thoughts on why the foods that are worst for you while on pred also seem the ones you crave most when you have a pred snack attack. I can see why they are desired during a diabetic hypoglycemic episode since you need to increase you carb intake quickly to raise the blood glucose level. I never did really understand how eating helped a pred snack attack since those seemed harder to satisfy for me. At lower pred dosage I only get a few hypo episodes now and generally eat much less of the above foods.

[Sangye]

Pred tells your body that it's starving. (More accurately, it blocks the sense of satiety-- feeling full) The human body stores fat if it perceives that it's starving, hence the craving for fatty foods. The salt craving comes from the adrenal stress, since the adrenals help regulate salt balance. The sugar cravings are a result of pred messing up sugar handling, which is why people often develop steroid-induced diabetes.

[gwenllian111]

Pred tells your body that it's starving. (More accurately, it blocks the sense of satiety-- feeling full) The human body stores fat if it perceives that it's starving, hence the craving for fatty foods. The salt craving comes from the adrenal stress, since the adrenals help regulate salt balance. The sugar cravings are a result of pred messing up sugar handling, which is why people often develop steroid-induced diabetes.

Interesting.

If I restrict my diet while on pred, I actually get stomach pain unless I eat. It's crazy. My fighting weight is 8st 7lbs.

[gwenllian111]

None of my docs (including endocrinologist, ENT, neuroopthalmologist and Wegs doc) is worried about staying on pred at 5 mg or lower indefinitely. They basically consider that harmless. The biggest risks are at doses higher than that. Even 10 mg for several years can cause major problems.

.

A doctor recently told me that 7.5mg or under won't produce side effects. Whether that's true or not, I don't know.

[Dirty Don]

A doctor recently told me that 7.5mg or under won't produce side effects. Whether that's true or not, I don't know.

My pulmy just said same thing...I've been at 5mgs for 6 mos. now...except for my putting (!?!?!?!), don't seem to have side effects, not like at higher doses anyway.

[pberggren1]

Golf and pred are not related Don.

[Dirty Don]

Golf and pred are not related Don.

Wellll, I tried...LOL

[Sangye]

A doctor recently told me that 7.5mg or under won't produce side effects. Whether that's true or not, I don't know.
They say it, but it's not true for me. At 7.5 mg I always still have a lot of side effects

[KathyB]

They say it, but it's not true for me. At 7.5 mg I always still have a lot of side effects

Ditto!! I'm at 5 mg and still have side effects!

KB

[freakyschizogirl]

Ditto for a third time, i had a friend in tears as she was reducing from 2mg - 1mg and felt so crappy with different side effects. The doctors all said that she should have no side effects for such a lose dose but i'd also experienced new side effects coming down from 4mg - 3mgs. The best things to know are you're not alone and doctors know nothing. Yes, medically and clinically there may be no adverse side effects at low doses but from experience we know different.

[Lightwarrior]

Ditto for a third time, i had a friend in tears as she was reducing from 2mg - 1mg and felt so crappy with different side effects. The doctors all said that she should have no side effects for such a lose dose but i'd also experienced new side effects coming down from 4mg - 3mgs. The best things to know are you're not alone and doctors know nothing. Yes, medically and clinically there may be no adverse side effects at low doses but from experience we know different.

Before they jacked me back up to 40mg to try to stare down this flare I could not get below 5, even 4.5 caused problems. Theoretically, it should not cause problems, it just goes to show that we are all unique and do not necessary follow theories. It is easy for someone who doesn't have to live this like we do to say something like that.

[drz]

My pulmy just said same thing...I've been at 5mgs for 6 mos. now...except for my putting (!?!?!?!), don't seem to have side effects, not like at higher doses anyway.

My endo says 5 mg is still having an adverse effect on my diabetes and ability to lose weight along with general adverse effect upon whole body, but the risk of a big flare and its damage is much worse so stay on it for now. Maybe in a year we can try taper the pred.

[drz]

Ditto for a third time, i had a friend in tears as she was reducing from 2mg - 1mg and felt so crappy with different side effects. The doctors all said that she should have no side effects for such a lose dose but i'd also experienced new side effects coming down from 4mg - 3mgs. The best things to know are you're not alone and doctors know nothing. Yes, medically and clinically there may be no adverse side effects at low doses but from experience we know different.

They may be right in the effects are not anything they can see or measure, but that doesn't mean we can't feel or notice the impact upon us. Some times it is very immediate and noticeable for us and it is distressing if they discount our feelings and self report, it sort of smacks of them saying "you don't know anything about your body" and the doctor saying "I am the expert so stop complaining about something that can't happen cause I said it can't"

[Col 23]

Ive also been on it for 3 years lowest I every got was 7 and 1/2 mg for a week. Absolutely hate it.
Hi Phil how have you been?
Col 23

[Sangye]

Some of the signs of pred being too low (ie adrenals aren't awake enough yet):
--unexplained tearfulness
- sudden afternoon sleepiness, like being given anaesthesia
- depression
- more weak than normal

In addition to these symptoms I also notice that I feel hopelessness. I don't usually feel that way, so it gets my attention.

[pberggren1]

Ive also been on it for 3 years lowest I every got was 7 and 1/2 mg for a week. Absolutely hate it.
Hi Phil how have you been?
Col 23





I'm not too great right now Cole. Might have a lung infection. Feeling a tad achy, no fever. Slightly weak and fatigued and overall tired. Breathing feels more tight. Coughing more. Sputum is a tad darker, more yellow and slight light brown. Could be that my bronchials are just closing in again. Been feeling like this since middle of last month. My doc gave a script for Arithromycin but said not to get it unless my sputum turns green and I start to have a fever and get more achy. I just play it day by day. I go see lung doc on the 27th for a basic bronch and possible balloon dilation. Hopefully he says I don't have to come back for a rigid bronch.