Chronic GVHD ~ Let’s talk about it!

I think mystery writer is your new calling, Lori. Excellent plot!

Very interesting about autoimmune diseases going away after stem cell replacement. Makes sense though. Doesn’t sound like a good option now certainly, but maybe offers some hope with future research, especially for the more devastating ones like MS and CFS. There are few medications that really work for most autoimmune diseases,

I take ursodial for PBC, although it doesn’t have a great track record. I think like 30% of those with PBC reject in the first year, then it increases, but not rapidly. My primary didn’t connect my symptoms which I had reported over many years, so that’s why it wasn’t diagnosed until I was in stage 3 liver cirrhosis. But, I’m very good to my new liver, so hopefully he’ll stay around for many years. Sjogren’s on the other hand has gone rampant after my transplant, never had any symptoms prior, so weird.

Hi my husband is 1 yr out of stem cell transplant. He has been dealing with GVHD for about 5 months now. His Dr and the whole team have been working with him. Steroid creams, eye drops, etc. but the prednisone he is still on because of GVHD has caused him to have to insulin shots, it effected his sugar #. He never has problems with it prior to prednisone. Dr’s are lowering slowly, 🙏🏻 This works. Besides all the medicine he is still on including Tac. I’m so very proud of his disposition. Thank you god for keeping him here with me.
Linda

Hello Linda, welcome to Mayo Connect. I’m glad you found our discussion on GvHD. Being the caregiver for someone with GvHD is a bit of a roller coaster ride for both of you, isn’t it?! Your husband’s a very lucky man to have you by his side to help weather one of the most challenging times of his life.
Congratulations on his one year Re-birth day. That’s a huge mile stone! It’s reassuring to hear he has such a great disposition throughout his hurdles with GvHD. Unfortunately, in all various shapes and forms, it is a pretty common side effect with our gift of a second chance at life.

It’s ok to be on Tacro and the other meds for a longer period. I’m 2 years, 2 months past my 2nd anniversary and just now tapering off the Tacro. It has kept me from the worst of any more GvHD events for which I’m grateful to my transplant doctor for taking this conservative approach. Eventually, the new immune system will acclimate to our bodies and calm down on its own. But in the meantime, prednisone is often the wonder drug to stomp out the little fires that pop up. I’m sorry to hear he’s having to take insulin right now but most of these side effects diminish or disappear when he’s off the prednisone.

If you don’t mind my asking, what led your husband to needing a stem cell transplant?

I was bummed to find out those books are already being written and someone told me CSI has had an episode or two with the same plot. LOL.
You’re so right, with time and research maybe there will be a future for stem cell transplants for more autoimmune diseases. Before that can happen, side effects of the transplant will need to be less dramatic. Now, however, it is not commonplace simply because it is grueling and comes with its own challenges.

Interesting, we share another drug…Ursodial. I’ve been taking that since transplant as a prophylactic to prevent liver issues.

Getting a second chance isn’t without some trade off is it? We’ll never fully be 100% of our former selves but it beats pushing daisies up from the underside. 😉

Thank you. Your comments are reassuring. He was diagnosed with MDS Leukemia. On Christmas Eve 2019. It’s been crazy ever since. We stayed in Rochester for 4.5 months while he was undergoing the transplant. But thank god he is doing great.

I’m happy to have brought a little reassurance. Leukemia is a wild ride for sure, no matter which variety! I had AML and so far so good with the transplant doing its job to keep that arrested.

Mayo-Rochester is my Mother-ship too! Spent 4 months there as well and can’t imagine better care anywhere.
So rest assured, he has a great team and they’ll have his (and your) back forever. I was told repeatedly that ‘we’re married for life’ with our transplant team. I’m over 2 years out and still connected with follow up appts and communications with my doctor and my team. They are thrilled with every victory and ready to jump to the rescue for any issues.

Knowing what he’s gone through, I share your happiness that your husband is doing so well. When people ask me what it was like I always say, “It’s definitely not a walk on the beach!” 😉

When is your husband’s next follow up in Rochester?

He has his appointments on the 25,26&27 of October. It’s his 1st birthday check up. 🥳 we definitely agree with our team. Is so great to know that 24/7 you can get help. Everyone on Carlton 9 is beyond fantastic.

Think how far he’s come in this past year! It’s a huge milestone. And when he walks into the transplant exam room this time to meet with his team, he’ll be walking in as a pretty healthy man! It’s an awesome feeling! I hope he gets all good news! 🤗
I’m going to be there the week before your husband…too bad the planets didn’t align, we could have met in the Charleton piano lounge for a quick hi. 😉

Well, I did some research. There’s only been a couple of reported cases involving DNA oddities in crimes, which were due to stem cell transplant. A number of investigative medical journal articles on it though…warning criminal investigators of the potential. I bet Sir Conan Doyle would have been all over it if he was living today!

Here’s a link to an article about doctors studying how long it took for a man’s cells and DNA to change…even his sperm DNA changed to that of his donor! Think about the ramifications of that! https://www.nytimes.com/2019/12/07/us/dna-bone-marrow-transplant-crime-lab.html

When I first started taking ursodial it caused hair loss, but not nearly as bad as Tacrolimus. I adjusted and doesn’t seem to affect me…hopefully it works well for us both! Definitely trade offs and certainly life is unpleasant sometimes, but as you say, we wouldn’t be here today without our transplants!

I have a question that maybe someone can answer. Has anyone had advice from a nutritionist on what foods to eat or to avoid that could reduce the occurrence of GVHD? Or is diet totally unrelated to GVHD? I have only had mild skin issues and high liver function test results, which they think were caused by GVHD, but I would like to avoid it as much as possible. 😊