← Return to Chronic GVHD at 11 months post stem cell transplant: Discouraged

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@marylou329 Up Date on Liver GVHD.
The original steroid I was on brought down my Liver functions test. However, a month later at my checkup my liver enzymes went up higher. I was put on 5mg of Jakafi 2 times a day. I just started this past Wednesday May 6th. I feel fine other than occasional itchy legs and arms and some heart burn.
I pray that Jakafi does the trick. I'm not sure how long I will have to be on Jakafi. I have a followup on May 26.
I am disappointed, but I will do what I have to do. Its just a blip in the road to survive.

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Replies to "@marylou329 Up Date on Liver GVHD. The original steroid I was on brought down my Liver..."

Hi @marylou329 Often taking meds like Jakafi, steroids or immunosuppressants for GVHD flares are temporary while the new immune system acclimates and the flares settle down. For some of us it can take longer. I was put back on tacrolimus for 2.5 years albeit a lower dosage than what I had a transplant for a chronic gvhd issue involving my central nervous system. Thankfully that dissipated and all clear!

My liver had been impacted by the intense chemo for my AML treatment for the several months before BMT. So it was already a bit ‘touchy’ and has been temperamental on and off for several years with big swings in the liver numbers. My doctor was suspecting a mild gvhd reaction ‘nibbling around the edges’ as he put it. He held off suggesting treatment but really kept an eye on the numbers. It was finally last fall, 6 1/2 years post transplant that my liver numbers were all great! High fives all around at my BMT followup that time. I just had a 6 mo. followup labs and they’re all still good! Fingers crossed all systems are playing well together now. So hang in there! I would hope it’s the same for you!

Livers have great recuperative abilities. My dietician had suggested making sure I got some of the key dietary elements to help my liver heal. I can’t send my cheat sheet but I found a good link online for you. At least as a guideline:
From Healthline:
https://www.healthline.com/nutrition/11-foods-for-your-liver
These little bumps in the road tend to smooth out over time. So hang in there! Will you please let me know what you find out from your May 26th followup?