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Old Thu May 3, 2018, 04:08 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Great question. Generally speaking, if you have acute GVHD, your odds of cGVHD are much higher. It is true that GVHD tends to become milder or more manageable the further out from transplant you go. I have had GVHD since my transplant and am now over 4 years out. Mine is pretty mild in comparison to your mother it sounds like though. I have had cGVHD of the eyes, skin, and gut and have been on tacrolimus continuously, with occasional additions of the steroid skin creams, and a few different stints with entocort (budesonide for the gut)

I can say that the severity and recurrence frequency is dropping, but not completely gone.

There is a newly approved drug for cGVHD that might fit in your mother's case and may be worth the discussion with her doctor. It is called ibrutinib. it has been around for a while, but was only recently approved for cGVHD.

Also, photopheresis if it is available might be useful for some of the skin 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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