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Old Tue Dec 12, 2017, 12:47 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Ray,

I think it is all a living, changing experiment to try and get it all right. I have been able to wean myself off of the hydrocortisone and don't take any currently. I was a little bit more proactive than the doctors on this one. I figured that as long as it did not cause major issues with bp, balance, or weight loss/gain that it would be alright. I have not been tested, but I believe that I am in good shape. The one thing that I still use is a testosterone patch about 1 day per week as it seems to help energy levels.

I have had GVHD of the eyes and have just utilized the cyclosporine drops whenever i get a flareup.

I too am on tacrolimus 1mg twice per day - a pretty small dose overall - I have experimented with going down to .5mg twice a day, and even went to alternating days, but I always seem to get a pretty nasty bout of gut gvhd, which has been my nemesis. I am currently fighting a pretty bad bout of it and have added budesonide to my regimen. The positive is that it is not a systemic steroid, so it doesn't have the same adrenal and functioning effects - so you don't get moon face, nor diabetic blood sugar levels.

Skin cancer - yes, me too. I see the dermatologist every 3 months and have a tube of efudex - 5 fluorouracil (sp?) that I use on different sections of my arms, neck, and face every month alternating. I have my dermatologist freeze off almost anything that shows up on my head and arms when possible.

I think that photopheresis was doing some good, but my line kept getting infected, which was a more clear and present danger than the level 1-2 cGVHD.

My doctor is suggesting maybe switching to MMF or even trying ibrutinib which was recently approved for cGVHD, although the side effects profile looks pretty nasty to me.

instead of high blood pressure, i have been diagnosed with bradycardia, but that is kind of back to my normal state. It is not uncommon for me to have blood pressure of 90/55-60 at rest.

Aside from your eyes, where are you experiencing gvhd? for me it is grade 1 on the skin, grade 1 in the eyes, grade 1-2 in the gut, and otherwise good.

The quick answer to your question - yes, more immunosuppression could knock out your GVHD. The difficulty in doing so means that you have greater risk of infection, you have greater risk of additional secondary cancers, and you could present a challenge to your new immune system that could cause late rejection. I imagine that last one is only under severe immune suppression.

Some of the treatments for GVHD are a little more localized which tend to limit risk to you, which is why I ask where your GVHD is.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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