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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jun 18 8:57pm | Replies (402)
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@leilab1

Hi Lori,
This new year has presented Alex(us) with new mysteries without answers. Initially, he was doing alright with BMT recovery. Then he received a Flu shot and "things" started going downhill. I'm now suspecting that he has VEXAS. I've just recently discovered this condition and am waiting to hear back from Alex's BMT-Team. Any thoughts?
Thanks,
Anita & Alex

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Replies to "Hi Lori, This new year has presented Alex(us) with new mysteries without answers. Initially, he was..."
Lori, Volunteer Mentor | @loribmt | Jan 21 9:53am

Hi Anita and Alex, If it’s any comfort at all I react to most all the vaccines now, even 4+ years after transplant. I seem to develop some type of inflammatory response which can last for 2-4 weeks and then it settles down. My response usually starts about a week or two after the vaccination with neurological symptoms. This includes Covid vaccines, influenza and recently, after waiting 4 years to finally receive it, my MMR vaccination. This one was the most pronounced.
Many people have similar reactions to vaccinations and right now, being so early after his SCT Alex’s immune system isn’t predictable so he can have changes in his blood work and symptoms from many different factors.

VEXAS is pretty serious autoimmune condition and generally involves a mutated gene. That would be a far stretch at this point so soon after his transplant.
So let his team work through this with him. Has he made any changes to his medications lately, such as reduction in his tacrolimus?
What are his symptoms?

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