What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Prednisone before transplant?

chris27rocker

New member
Hi, I'm new to posting on the forums, but I've been reading them for a while now.

I was diagnosed with Adrenal Insufficiency in 2008, and was told flat-out by endocrinologists, "you will be on Prednisone as long as you live". I've been on 30 mg Prednisone per day for almost 2 years. I haven't been able to come down on it because my fevers spike too high and my o2 sats drop too low. When I went to be evaluated for transplant, the doc said I had to be off of it, then said maybe under 10 mg a day was okay, then after deliberation, maybe 15 mg. She said it would inhibit wound healing - which I've already experienced on smaller scale.

My question is, was anyone on high-dose steroids BEFORE transplant? Or was adrenal insufficient?
 

CrisDopher

New member
A lot of us are on 10 or as much as 20mg prednisone right up to the day of transplant. It does inhibit healing, but...you'll be on a massive dose of steroids the very day of transplant onward. 30mg is, comparatively, a drop in the bucket, though it might be worth trying to wean backwards a little bit. I think a more "real and present danger" is of devloping CFRD.
 

azdesertrat

New member
No, I wasn't on Prednisone pre-trans.
In fact, once I asked my pulmonologist (pre-trans) why he didn't just put me on a steroid continuously. I had just finished a Medrol Dose-Pac at that time.
The pulmonologist told me he was keeping me off steroids as much as possible because he didn't want me to suffer the side effects.
Now, post-trans, I'm on 7.5mg of Prednisone twice a day. At that small dose, I don't really suffer from many of the side effects, other than feeling tired alot.
I realize that every situation is different & no two CF patients are the same.
I hope at some time you will be in such a condition as to allow your doctor to at least lower the dose.
Best of luck, 'Pat'.
 
Top