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

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@loribmt

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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Replies to "Hi Anita and Alex, If it’s any comfort at all I react to most all the..."

Hi Lori,
Alex's symptoms involved synovial effusion in his right hip and also edema in both ankles. He now has a clicking noise in the affected hip joint and experience is difficulty walking.
He is being referred to a rheumatologist. We'll see.....
It's a relief to me to know that this response is to be expected in some cases but getting to the root cause would go a long way in explaining symptoms.
I really appreciate your ongoing support!!!!! Hugs 🤗

Tacro is titrated to 0.5 now but prednisone has been increased slightly.