Post transplant exhaustion

[Stinkerbell]

My husband is exhausted. It's more than fatigue--the man sleeps for 15-16 hours a day at least. It's been getting increasingly worse. We have brought it to the attention of the BMT team and it's been noted. They checked his TSH which was normal. He was on prednisone from March until May 28 for GvH of the stomach and they think this could be related to prednisone withdrawl. Everything else is good bloodwork wise -- platelets are around 230,000, WBC and ANC is normal.

Has anyone gone though this too?

[mausmish]

My mother has not had a transplant but she has seen this with prednisone withdrawal. What was his highest dose and how gradually did they taper him off - the more gradual, the better.

[Stinkerbell]

His highest dose was back in March and he tapered to 6mg daily some time in April, where he remained until he went off it. So he was on 6mg daily for about a month and a half.

[mausmish]

Depending on how much the highest dose was, that sounds like a fast taper from March to April. Also, when the doctor tried to get my mother from 10mg to 5mg, they took her down 1-2mg every three weeks. I can see a big difference in her when she gets as low as 7mg - terrible fatigue. She's never been able to go lower than that due to her illness and really functions best at 10mg. I guess my point is that even as little as 1-3mg difference can have a big effect. Perhaps a taper from 6 to 1 gradually would have done better (I honestly don't know, just guessing). You should read Flamingo Jim's blog (http://jimschmitz.wordpress.com/#!/page/1). He is currently undergoing post transplant taper off prednisone that he had to take for liver gvhd.