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Donna,
Congratulations on the 3rd year. Muscle mass and strength does improve with prednisone tapering. The PT, steady exercise, even a little, and good diet help a little as well. It does take a while to ramp back up though. I think that a visit to the endocrinologist is a good idea. I have been placed on hydrocortisone as I was experiencing some adrenal insufficiency, and it seems to be a little gentler than prednisone. Hydrocortisone does not really have any anti-gvhd qualities from what I understand though, so you may need another alternative to control the gvhd.
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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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