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Permalink Reply by Mark E on March 16, 2009 at 11:54am

hey. I was on preds for only the first 4 months or so-up and down depending on my blood work (I guess) being on a high dose made me into a "chipmunk" my chipmunk mode I called it.big cheeks, bigger body- also I was very emotional, mostly loving and fuzzy. preds also made me feel like an automaton, I would walk without even being aware of it- like I was on automatic pilot. the worst effects was when they weaned me off it too fast- I crashed for a day or three, couldn't get out of bed felt terrible, but then again I'm off it 1yr and somedays I still feel terrible and can't get outa bed. all in all I'm glad to be off that stuff!

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Permalink Reply by eric goberman on March 17, 2009 at 7:31am

Such a weird drug.. Sometime ago I found a website that listed something like 150 known side-effects for this. My center, like others, has no set protocol..each doctor does their own thing with the drugs in general and each patient is different. The variations are endless.

I was on moderate does right after transplant slowly descending to about 5 mg after a year. I learned two things: Don't drop it too fast. 1/2 to 1/4 mg drop every few days..and sometimes bouncing prevents too many side-effects from going lower. (I get massive leg cramps when I lower the dose too fast) Bouncing is..taking varying doses til I get where I want. I don't just drop from 6 to 5 mg. - it may take me two weeks or more.

For the cramps.. tonic water or quinine take care of that (sometimes a heating pad on my feet or legs).

Rule of thumb for prednisone is it takes 1 month for everyweek you are on prednisone to have the side-effects go away.
Things like chipmonk cheeks, buffalo hump (back of neck), acne and a list of others, are more prevalent in extended does 10 mg and up.

In the last year, I've dropped from 4 mgs to 1 mg per day I have had no major bad events - at least not from the prednisone. We all have bad days. having a transplant is a roller coaster regardless of the drugs.. The drugs add their own side-effects and the combination of drugs amkes more side-effects.

It's the end of winter and one things that I found is that getting outside - even for 5 or 10 minutes - per day.. and get some sunlight really helps.. shortsleeves, if I can, just to get some rays on bare skin. Helps a LOT

On top of all the drugs, let's face it, a transplant is not a cake-walk. We are barraged daily with physical and emotional attack. Having a bad day isn't a problem - it's normal. Look how many good days we have. And how can we appreciate the good days without a bad day or two ??

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Permalink Reply by Renee D. Crawford on July 19, 2011 at 12:41am

Perfect description

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Permalink Reply by Joe Berry on September 5, 2011 at 8:41am

I was on Prednisone for 7 months post-transplant.  The first thing I noticed was fatigue and I lost 10 pounds almost instantly.  My mood swings were gone, but the fatigue was there.  I don't know if the going off of Pred caused the fatigue or the transplant caused it.  My doctor seemed to think it was the transplant.  I began feeling like myself about 15 months post transplant.

I have had to had Pred three times to help with infections.  For the short bursts of 5 - 10 days it did not seem to impact anything except mood.

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Permalink Reply by Inspiring on November 27, 2011 at 4:08pm

I've been on Predinose  pre-transplant and still on it nearly 36 years later.  In my earlier transplant years, I experienced so many side effects that I asked my nephrologist to take me off, but he felt it is easier to handle side effects than being on dialysis, especially with  a rare blood type and awaiting a transplant.  

After thinking about it, his rationale made sense to me so I give in and take that one pill a day. 

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Permalink Reply by Donna Mller on August 6, 2012 at 1:36pm

I had my transplant in 1971  and have been on prednisone all this time.  Have good days and have bad days.  I am on 10 mil every other day.  Hey, I'll take the side effects, worth it compared to the worse results not taking it, don't you think?  I am alive.

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Permalink Reply by Victoria Tu on August 25, 2012 at 8:18pm

Do you have a chipmunk face??

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Permalink Reply by Brian Hall on December 11, 2011 at 8:03pm

I hated Prednisone from the get go. I stopped it myself once for several days and my sister-in-law who is a nurse called me up and told me it was extremely dangerous to stop cold turkey. I had the flu really bad while I was taking it and ended up in the hospital, but I lost about 30 lbs of water weight that I had gained from the Prednisone. I was tapered off it maybe 3 months after my transplant and I've never been happier.

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Permalink Reply by Terri Lynne on December 31, 2011 at 11:58am

I was on Prednisone for 17 years when I was taken off it. I noticed I wasn't as energetic as I was while on it and my body hurt all over.

Now 20 years out and still off of it...

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Permalink Reply by Jasman Benjamin on August 6, 2012 at 2:34pm

I was on Prednisone for about a year and was slowly taken off of it. When I was first taken off of it my joints ached really bad which my Dr said was normal but after awhile I began to feel better and feel great now 4 years later.

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Permalink Reply by A. Front on August 9, 2012 at 3:32pm

It's important to wean off slowly. I pushed to get off it asap but still landed up doing it for 8 months. Nasty stuff.

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