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@bailie - you are one tough person.... 160mg prednisone is one heck of a dose. The highest dose I ever hit was 100mg back when i was being treated for ITP (I was 215 pounds at the time). At 60mg, I want to rip through buildings like king kong with unforeseen moments of irrational anger, and I have the energy to do it. Two hours of sleep? way too much!
@PaulS - energy levels seem to come and go after stem cell transplant. There are days where I feel pretty darned good on the scale of things, and others where getting up the 10 steps from the basement to the main floor is a challenge. 3months out of transplant I was able to walk 4 or 5 miles a day, and recently getting a quarter mile in was a challenge. I am back to where a couple of miles a day is reasonable. Ups and downs both physically and mentally are just part of what we work with each day. I also have to say that I really agree with the hope and acceptance pieces that you brought up here. Hope is powerful, and acceptance is motivating.
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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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