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Hi Ray - how much prednisone are you on now? What else?
At six months I'm on tacrolimus, mycophenalate and prednisone - and trying to slowly wean the prednisone and mycophenalate - expect to be on the tacrolimus longer - When I had my initial GVHD they also gave me a high dose of prednisone. Then I stabilized around 50mg - I had four rounds of Rituxin - It worked great and let them start tapering the prednisone - now alternating at 5mg/20mg - and probably going down to 5/15 soon. Very nasty side effects.
An eye doctor looked at my eyes which are a little dry and suggested a hot compress in the morning to reduce the need for drops. I do that sporadically - but it always feels good when I do.
I agree with DanL's suggestion to get a second opinion or at least be more aggressive with your doctor - I do think there a lot of tools in the anti-GVHD arsenal - Let your doctor know your not OK with the status quo - and you expect him/her to find a way to eliminate the GVHD and improve your quality of life. The GVHD may be OK with the doctors - but not with you - Ask what else s/he can do.
Good luck - and best wishes
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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