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Chronic GVHD at 11 months post stem cell transplant: Discouraged

Posted by deb913 @deb913, Oct 13 8:17am

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 7:47am
In reply to @marylou329 "@loribmt My Fibroscan came back that I had very mild Grade 1 fatty liver. I started..." + (show)
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@loribmt
My Fibroscan came back that I had very mild Grade 1 fatty liver. I started the steroids yesterday and so far so good. I'm not hyper so no baling is getting done 🤣and I am sleeping well. I hope it continues that way.

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@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.

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marylou329 | @marylou329 | Dec 12 8:45am
In reply to @deb913 "@marylou329 Hi - I just wanted to add that I hope you do have a good..." + (show)
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@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.

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@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.

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