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Old Fri May 13, 2016, 07:16 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Data - Sorry your still having a hard time - is the rash very uncomfortable? Any symptoms from the virus - any other organs affected by the GVHD - mouth, digestive system etc -- are you eating OK? Able to walk around the halls? Are you counts still doing OK - my platelets went down from the GVHD and took quite a while to go back up - and only after Ritixun -

Sounds like they're on top of things and treating the problems aggressively - which is good. My doctor would tell me I'd just have to ride out the GVHD storm - that it could take a while - ok I'm paraphrasing a little, he said it much better but i liked the storm metaphor.

When I first had GVHD - skin only but pretty extensive - they gave me a high dose of oral prednisone - that I'm still tapering - Initially IV prednisone at the day clinic - which reduced some very uncomfortable itching. Eventually Ritixun - Also MMF (finally off) and Tacrolimus - still on. Also Fluocinonide cream (.05%) - they told me to use it very liberally - and they preferred to treat reaches topically to the extent possible. Interesting how centers - and even doctors within the same center will treat similar things a little differently.

It all took a while - and I'm not done fighting it yet - but its pretty much under control and I'm optimistic I will be off everything eventually. Learning patience was a big part of the transplant process.

Hope things start getting better soon.

Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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