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Ray,
Good to see you post. I know that you had a really tough initial ride but came through heroically. Prednisone can have some pretty nasty long-term side effects - I have cataracts and Avascular Necrosis as a result of its use, which means that I have a new left hip and am waiting to replace the right one and my left knee, possibly my right shoulder as well. Prednisone, unfortunately is also one of the best quick-acting agents against gvhd. I have maintained pretty well with higher concentrations of Prograf and Entocort for the intestinal issues. That being said, I saw my best improvement after doing 4 cycles of Rituxan. I have also had over 1 year of photopheresis, though I have not done any photo for over 4 months now. My numbers are all normal for about 3 months now - my HGB has decided that 12.4 to 13.4 is my new normal.
To answer your question though - it may be worth a second opinion - i know that my dr. really likes sirolimus - I cannot take it due to HUS/TTP, which is one of the potential side effects - We are working on "steroid sparing" techniques of managing gvhd because of the AVN. There are so many options for managing gvhd - the last list i saw was almost 20 items long - that there just might be something that you respond to that does not negatively impact you.
I just passed my second year post transplant on February 26th, so we are not that far apart.
Good luck as always!
Dan
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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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