Hi @jrwilli1 @hopeful33250 brought me into the conversation because I had a bone marrow transplant and pretty familiar with Chronic Graft Vs Host disease which happens to most of us with an allogenic transplant to some degree. We need some GvHD for the transplant to be effective.

I’m a little confused after reading some of your previous replies so I hope you don’t mind if I ask a few questions just to clarify.
Your husband was diagnosed with Parkinson’s 7 years ago and has been taking meds for that. He had an allogenic transplant for MDS 7 months ago, so April of 2023.
You mentioned he’s off his anti-rejection meds already?

I guess my questions are about the doctors’ concerns. Is this about the low sodium and what’s causing that? Or regarding your husband’s tremors. Are they getting worse now that he’s off the anti-rejection meds?
Some of meds can cause tremors. Especially meds like Tacrolimus. Once off, those tremors should disappear. But there is then a risk of GVHD. I don’t know the impact this would have on his Parkinson’s. So much remains a mystery in our journeys. But bringing in a neurologist is key at this point.

We all have different schedules for tapering off anti-rejection meds depending on how well the new cells (graft) ‘play nicely’ with the host (our body). The cells look at our body as invaders and like all good immune systems, will do what they can to launch an attack. Basically the new cells want to kill us off…which of course isn’t good for us or the immune system 😵‍💫. So, sometimes people require being on the immunosuppressants longer. I was on for 2.5 years because, as we joke in my house, “The force is strong with this one! 😅)

Anti-rejection meds are very strong immunosuppressants to keep the new immune system suppressed while it’s getting used to the proteins of the new body…to stop the rejection. Your husband apparently was able to get off the anti-rejection meds early in the game but that doesn’t rule out GVHD. It can happen at any time after transplant.
So it’s very important that your husband sees the neurologist to rule out GVHD involvement in this case. The new cells will be trolling throughout the body, looking for inflammation. If they find cause (which sometimes makes no sense to us) the new immune system can create subtle symptoms at first which can escalate into a more serious situation. That can take some sleuthing. It generally is a process of elimination. Sometimes a burst of steroids is given for 5 days in hopes of quelling the reaction.

I’m so happy to hear he’s doing well otherwise and the MDS is under control. Our BMTs are an amazing gift of a second chance but we do need to be vigilant for possible side events. Will you let me know now your husband’s neurology appt goes?