Journal entry by Leslie Cavanaugh

Officially finished with infliximab (Remicade) infusions!!!  I think she ended up getting about 15 or so of them since mid-August. Her GVHD is significantly better.  At this point, he’s just going to leave her on a low dose steroid to help reduce the risk of a flare-up. She was switched from the prednisone to hydrocortisone at her last visit and she seems to be tolerating this steroid a little better.

Alyssa’s labs all looked good at her visit on Friday.  Next appointment on October 31st.  He is going to have her see an endocrinologist at that visit.  He wants to get a second opinion on if there’s a better/faster way to wean her off the steroid completely.  Very happy we are getting a second set of eyes on her regarding the steroid wean. 

Alyssa is working out everyday, trying to get some her muscle tone and stamina back. Slow process but I’m so proud of her for doing everything she can to keep herself healthy.  This is probably the best she has felt in about 5 months.  Slow and steady....
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