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Old Mon Feb 11, 2013, 11:29 AM
BrianFlaigmore BrianFlaigmore is offline
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Join Date: Jul 2012
Location: San Diego CA USA
Posts: 27
Chronic GVHD Skin suggestions?

Hello all,

I am now about nine months post-transplant and it's becoming more clear that I am having some GVHD on mostly my face. It's really not terrible but enough to keep my doctor prescribing me more and more. It manifests as really dry skin and a circular rash on my neck and two blotches under my eyes. Right now I am on Tacrolimus, Sirolimus, and prednisone. The Sirolimus has successfully lowered my platelets, but nothing else (they were in the 100's but now in the low 80's). The only thing that seems to do anything is the prednisone, which we keep going between 10 and 20 mg per day. I know that doesn't sound like a lot but I have become very sensitive to it for some reason. I get night sweats all night long, crazy mood swings, and muscle cramps all the time. I was on 80 mg for almost a year and it didn't affect me as bad as when I'm at 20 mg now.

My question is, has anyone had any success in combating chronic skin gvhd without steroids? I am trying lots of lotions, but sometimes they seem to make my skin have more of a burning dry sensation.
Any information would be great.

Thanks! Brian Flaigmore
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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