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Old Mon May 13, 2019, 03:54 PM
shadowii shadowii is offline
Join Date: Apr 2019
Posts: 38

Welp its official (or it will be after the biopsy)
my dad has grade 1 acute graft vs host disease
they don't seem to worried and believed the steroids will stop it in there tracks.
They still plan for his next appointment to be Thursday but to call if rash is still there Wednesday.
but I am freaking out.

Please people tell me stories of living with it because my mind is going to dark places regarding his health
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Old Mon May 13, 2019, 11:27 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 584

In many ways, grade 1 acute GVHD is good news for the following 1) it is not something worse, 2) it is in the early stages 3) many doctors consider some GVHD to be a good thing due to its possible GVHD vs MDS effect, meaning that if your father's immune system is working hard, it is more difficult for MDS to come back, but this is a speculative benefit.

I have lived with grade 1-2 GVHD both acute and chronic for 5 years post-transplant. The key to it all is to always report all symptoms, no matter how small they seem to be so that action can be taken early. When GVHD gets to grades 3 and 4, it is considered to be more dangerous than beneficial, so controlling it early is the way to go.

For the most part, GVHD has been a nuisance, a need to go through more drugs and creams, and more frequent doctors visits. For skin GVHD, it is tightening skin, itchiness, some stiffness. For GVHD of the gut, it means trouble digesting food, more frequent and watery bowel movements, and some increased likelihood of infection. GVHD of the liver mostly shows up in blood tests, but is rarely felt until it is really late in the process.

I think that what you were looking for though is can you live with GVHD?Absolutely, and most symptoms are quite bearable. Always report, always take the meds.

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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Old Wed May 15, 2019, 12:40 PM
rar rar is offline
Join Date: Mar 2014
Location: colorado
Posts: 214
Good advice Dan.

I am just short of 5 years post transplant. In most cases the GVHD is not a real problem and seems to cease being a problem in a couple years. Not so for me.

3 months post transplant I had a severe case of gut GVHD. My wife was advised that it would probably be fatal. They did not tell me so I survived. I spent 2 months in hospital and went 3 months without eating or drinking anything. I was on IV feed.

Things got better. At the 1 year mark I was declared to be cured of MDS and I was taken off all drugs. Within days I came down with severe skin and eye GVHD. Ii was put back on drugs. The skin was healed but the eyes have gotten worse. I now have anemia, fatigue, blood pressure problems and dizziness while not life threatening are is giving me poor quality of life. My doctors have no way of telling for sure if my problems are GVHD or something else.

I partly blame the doctors for not tapering me off prednisone at the 1 year point. My advice is to do you own research and not to be afraid of questioning your doctors.

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Old Wed May 15, 2019, 03:51 PM
shadowii shadowii is offline
Join Date: Apr 2019
Posts: 38
thanks for the advice guys
looks like the steroids or beating down dad's grade 1 as he is eating (gorging really) and the rash is severely diminished, lets just hope it stays that way.

Also RAR I know your story I've followed your posts here, on the mds forum, and mds survivors board. I think its inspiring that the doctors flat out told you had such a small chance of surviving and are still here 4 and 3 quarters years later, despite all the bad luck thrown at you. I know your still having your troubles but you have always given me hope.
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