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Shannon,
The GVHD alone may be responsible for the delayed platelet growth, especially if the biopsies are looking good. My doctor gave me 6 cycles of rituxan to get me off of steroids, which i forgot about in my last post, but Rituxan is frequently used to treat ITP and has recently been experimented with for managing GVHD to spare the use of steroids. Rituxan tends to be very manageable in terms of side effects - I have been treated with it twice for 6 cycles each time - once 6 years ago and then another time this last year. Although Voriconazole is not known for suppressing platelets, it was an interesting coincidence in my case that I stop Vori and get platelets. I have been working my way down from 30 pills twice a day and am down to about 30 per day total which is great. I know that one other drug - bactrim (used for pneumonia prophylaxis- can have very strong anti-platelet activity. I also responded very poorly to sirolimus and had to back off both times i tried.
Keep a positive attitude and know that this can be a long period of trial and error and correction to find the right combinations - some steps backward - I wish the very best for you and your son.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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