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Chronic GVHD ~ Let’s talk about it!

Transplants | Last Active: Nov 15, 2022 | Replies (68)
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I'm 5 years post SCT. I'm currently dealing with skin GVHD: scleroderma, rash, dark pigmentation. I went back on Sirolimus in June, but it's not really helping me. My doctor wants to put me on Jakafi after I have my liver biopsy next week and get a diagnosis for what's going on there.

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Replies to "I'm 5 years post SCT. I'm currently dealing with skin GVHD: scleroderma, rash, dark pigmentation. I..."
Lori, Volunteer Mentor | @loribmt | Sep 6, 2021

Just curious about how long you were on Sirolimus before you were tapered off after transplant? When did your GVHD symptoms begin?

I was, actually still am, taking Tacrolimus post 2 years. I had a major setback with GvHD on my spinal cord with my first taper. Got that back under control with Solumedrol infusions for 9 months along with upping the tacro dose. It worked and now I’m excited and a little apprehensive as I’m on the final leg of my taper with .5mg Mon & Thus each week for 3 more weeks. If no issues, I’m off!! Yay! And then I can kiss all my other 6 meds goodbye!

Have to keep just a little moisturizing lotion on my face or I get a weird rash. It almost looks like acne on my cheeks but as long as I keep it moisturized, it’s non-existent! So weird. When I was a teen, if my face looked like, that staying away from lotion was the best thing! I’m sorry you’re dealing with the scleroderma and pigmentation. I hope the Jakafi works well for you.

My liver was always an issue through out all of the AML and transplant. Especially on the 1000 mg IV steroids daily! Yikes. That sent my numbers soaring! LOL. It’s finally stable so I hope everything turns out to be ok with yours! Have you ever had a liver biopsy before? Just to let you know, it’s really easy and not at all uncomfortable.

Has your team suggested Photopheresis for your GVHD?

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