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Congratulations!!
So glad to hear of your progress and great results!!
We are at d +104 and trying to make small steps toward improvement. BK hem cystitis nearly resolved - no more bleeding for over a week and minimal symptoms and serum BK PCR down from > 2 million to 2000 copies with no antimicrobial intervention.
The skin GVHD continues to be problematic with recurrent flares - though of lesser intensity - when oral steroids are lowered. Now down form 80 bid Prednisone to 50 bid but with another flare and hoping we don't need to increase the dose again as he currently has steroid induced diabetes and proximal myopathy.
Local docs continue treating with photophoresis and steroids but I have heard Sirolimus can potentially be added to tacrolimus and assist with lowering steroids. Do you know anything about Sirolimus?
I see you are on topical Lidex and Desonide. On which areas are they applied? Do you also apply Aquaphor over the steroids to enhance potency?
Best to you!!
Congratulations again!
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