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Chronic GVHD ~ Let’s talk about it!

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 15, 2022 | Replies (68)
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@athenalee

Once you go off all of your meds I guess your chances of getting GVHD are greatly reduced? Do you still do regular labs? It’s interesting that stem cell recipients seem to suffer more from GVHD than solid organ recipients. But, you all get to go off your meds eventually, and we don’t. Any ideas on that Lori?

I guess because your basically developing a new immune system in your body, but we have just one or more new organs, but the same immune system, our body’s will continue to try to fight off our new organ indefinitely. Also explains why your food allergies go away.

Transplants are remarkable I have to say.

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Replies to "Once you go off all of your meds I guess your chances of getting GVHD are..."
Lori, Volunteer Mentor | @loribmt | Sep 6, 2021

Hi, you’re right in that solid organ transplant patients will be on anti rejection meds indefinitely. Your immune system will always look at the new organ, no matter how long you’ve had it, as an invader. It’s not an original factory installed part.
Anti rejection meds such as Tacrolimus are actually anti-inflammatory drugs meant to keep the immune system calm so it doesn’t go all ape on your new organ which is actually keeping the immune system alive by keeping the body going. Geesh! You think it’d be more grateful! LOL

So now you have me curious. Do solid organ transplants have GVHD or is it more Host vs Graft disease? Same principal really but in our case with stem cells, instead of an organ, we gained a new immune system. It doesn’t recognize anything! So instead of just seeing one organ as a threat, our entire bodies becomes the invader and it can launch holy heck against us. So initially we’re on immunosuppressives to hold it back until eventually it begins to recognize our bodies and over time, accepts us and we can get off the tacro.

Being off Tacro or Sacro or any of the other anti rejection meds opens us up to more GVHD. It will always be lurking. It happens, again, when our new immune system sees some crazy thing as a threat and launches an all out war. It can be skin, gut, eyes, any organ. In my case it attacked my spinal cord for no apparent reason. Lost feeling from my waist to my toes. Took a while to recover from that but now I’m perfectly healthy. I always say we transplant patients, no matter what we’ve received need to keep a sense of humor and a sense of adventure!

Since we get an entirely new immune system from a stranger, we also change DNA and blood types. We do have to match HLA markers, usually 10/10 is the best. My donor was a young man from the US. I used to be B+ now I’m O+. And I have all male DNA! 100% donor and 0%my DNA. I also inherit any allergies he might have had and may lose some I had before! Though he was 20 at the time, fortunately I’ve not picked up the desire to wear AXE pit spray or drink cheap beer. And any magazines under my bed are quilting related. LOL

Yes, I have regular labs yet. My leash has been lengthened and can stray further from a doctor’s office as numbers have returned to that of a healthy person!! Yay. So now I’m on monthly labs and that’s great compared to weekly!

My donor was my 1 in 20,000,000 members in the transplant bank.
What is matched when receiving a liver or kidney? Is it blood, HLA markers?

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