Chronic GVHD at 11 months post stem cell transplant: Discouraged

Posted by deb913 @deb913, Oct 13, 2025

Hi - I am feeling very discouraged because at 11 months post sct, after stopping all meds I just had a multi system case of GVHD and now I’m back on immunosuppressants plus all the other meds that go with it and prednisone.

It feels like such a set back since they said I have to be on these meds for 6 months before they’ll try to taper again. . I’m wondering about others’ experience has been in fully getting off the immunosuppressants - are most people able to get off, does it mean the transplant is less successful etc. Any info or experience is most welcome. Thank you.

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deb913 | @deb913 | Dec 12, 2025

In reply to @marylou329 "@loribmt My Fibroscan came back that I had very mild Grade 1 fatty liver. I started..." + (show)

@marylou329 Hi - I just wanted to add that I hope you do have a good experience on prednisone like Lori is describing, but for some people prednisone can cause severe mood issues and make it difficult to do anything because your mind is racing so fast. I’m not saying this to scare you but just to let any new prednisone user know that if you suddenly feel unpleasantly different from your usual self or find your self upset or angry consider it might be the prednisone and talk to your doctor. It can be a real issue for some people - lol yes I am someone who doesn’t do well on prednisone but I’ve been on it many, many times over the years and it’s saved my life so I respect it’s a very helpful medicine, I wish you all the best and hope you only feel the benefits of prednisone.

marylou329 | @marylou329 | Dec 12, 2025

In reply to @deb913 "@marylou329 Hi - I just wanted to add that I hope you do have a good..." + (show)

@deb913 Thank You. So far so good. I appreciate your input. I believe I am on a lower dose 40 mg. Hopefully my liver enzymes go down and they can start tapering the dose in January. It's always something I guess we just have to roll with it.

marylou329 | @marylou329 | May 10 10:22am

In reply to @marylou329 "@deb913 Thank You. So far so good. I appreciate your input. I believe I am on..." + (show)

@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.

Lori, Volunteer Mentor | @loribmt | May 10 2:12pm

In reply to @marylou329 "@marylou329 Up Date on Liver GVHD. The original steroid I was on brought down my Liver..." + (show)

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?

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