I remember putting up with GVHD after an allogenic stem cell transplant. I wouldn’t say my case was severe but it wasn’t too far from being it. Over half of my upper body had the GVHD rash on it, I look more like cheetah or leopard than anything, maybe I’m trans-species now?
I also had GVHD involvement in my liver too, that’d show up in my labs mostly. I also suffered from GI symptoms, my guts would hurt and I’d get something almost like diarrhea. I’d say the rash was the worst, it’d show up the most where legs and arms attach to your torso. You have to be careful with that rash, if it gets too severe you can lose mobility of joints. I had this transplant 15-16 years ago so things may have been different, probably not a whole lot. Getting the immunosuppressant drugs shakes in the most important thing, then they do a lot treatment with steroids for symptoms. For the rash they’d give me big tubs of steroid that you’d slather on, your clothes would stick to it, they sucked. I had GVHD for over 2 years and then that was it, it totally stopped. A little bit after 3 years post transplant I relapsed bigger than shit. I had a tumor in my sacrum crush all the nerve roots to the muscles below my waist, I couldn’t walk anymore and was confined to a wheel chair. Things really got exciting then, the transplants I had before were nothing compared to what was coming for me.