I think my GVHD has maybe returned after 15+ years

A myGVHDteam Subscriber asked a question 💭

I received a BMT from an unrelated donor in 2009 to treat MDS that progressed into AML. Since late may I have had several unsettling symptoms develop. I’ve lost a good amount of weight without trying - in dec of 2025 I was 146 lbs, as of today I am down to 116. I have had body aches, night sweats, dry mouth, on and off chest pain, a few mouth sores, spots of singular petechiae and a few instances of random clusters & extreme fatigue. I went to the er around Father’s Day for a dizzy spell and they gave me a CT with contrast - I ended up having a delayed full body cutenous reaction to the contrast 2/3 days after my visit. It was odd because I have had many many scans with the dye and have never had problems. I went back to the er to treat the rash and was administered prednisone and sent home with a 4 day supply - while taking that med I noticed not only the rash going away but all of my other symptoms completely improved. Within a week of finishing my last dose symptoms started returning.
I was treated for pretty severe acute GVHD very shortly after my transplant in 2009/2010 and recall taking prednisone/cyclosporine for at least a year or 2.

My abdominal CT revealed mild hydronephrosis with both kidneys. And bloodwork showed elevated abso monocytes. Other then that the tests ran in the er were fairly normal looking.

July 23
myGVHDteam

What symptoms might suggest that GVHD has returned after 15+ years, and what could explain the improvement with prednisone?

First, it's really important to say — what you're describing is serious and needs urgent follow-up with a transplant specialist or hematologist, not just an ER. The symptom pattern you're outlining Show Full Answer

What symptoms might suggest that GVHD has returned after 15+ years, and what could explain the improvement with prednisone?

First, it's really important to say — what you're describing is serious and needs urgent follow-up with a transplant specialist or hematologist, not just an ER. The symptom pattern you're outlining deserves a thorough, specialized evaluation as soon as possible. Several of your symptoms do align with known chronic GVHD presentations, including:

- Dry mouth and mouth sores
- Extreme fatigue
- Body aches
- Unintentional significant weight loss
- Skin changes (petechiae, rash)
- Night sweats
- Chest pain (which can relate to lung involvement in chronic GVHD)

Chronic GVHD can affect nearly any organ or tissue, and while it most commonly develops within the first few years post-transplant, it can — in rarer cases — emerge or re-emerge much later. The fact that your symptoms responded so clearly to prednisone — and then returned after stopping — is a significant detail worth highlighting to your doctor. Prednisone is a corticosteroid and a frontline treatment for GVHD. This kind of response pattern is something a transplant specialist will want to know about.

A short 4-day course is generally not enough to fully treat or suppress GVHD if that's what's occurring — which may explain why symptoms came back so quickly after finishing it. The 30-pound weight loss since December is particularly concerning and alone warrants urgent medical attention. Combined with everything else you've described, this really does need to be evaluated by a specialist — ideally someone with GVHD or bone marrow transplant experience — rather than managed through the ER alone.

When you seek care, make sure to bring:
- Your full transplant history from 2009
- Details of your prior GVHD treatment (prednisone/cyclosporine)
- The timeline of your current symptoms
- Your recent CT and bloodwork results
- A clear account of how your symptoms responded to prednisone Finding a GVHD specialist or a transplant center that manages long-term transplant complications is really the most important next step. Many academic medical centers have dedicated survivorship or long-term follow-up clinics for transplant patients that are well-equipped to evaluate exactly what you're going through.

You're clearly paying close attention to your body — that awareness matters, and advocating for a proper specialist evaluation right now is the right move.

July 23
A myGVHDteam Subscriber

The steroids given to me prior as a young teen ended up also giving me advanced AVN - if this is indeed GVHD, how am I going to be able to take care of it without making my AVN worse? I’ve had several surgeries from it, most recently including a total hip replacement in 2023

July 23
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