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I had some pretty dramatic swelling of my ankles from my GVHD meds post trans for PNH. I no longer take Rap/ Tac or steroids, just Nilotinib which is usually for leukemia. It seems to help w/ GVHD in some cases. But of course it has side effects and some insurance co's/providers may not pay for it since GVHD can be treated w/ less expensive drugs. Good luck in your treatment
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