← Return to Chronic GVHD ~ Let’s talk about it!

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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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Replies to "Just curious about how long you were on Sirolimus before you were tapered off after transplant?..."

How exciting to be tapering off! Enjoy your freedom and strong immune system!

I was on Cellcept and sirolimus for 2.5 years after transplant. I had upper and lower GI GVHD soon after my transplant. Then I was off all meds for two years, until this summer. This is my first time having skin GVHD. My doctor hasn’t mentioned Photopheresis yet, since she wants to try Jakafi first. I want to avoid Photopheresis because of the time commitment and how it will effect my job. We’ll see what happens.

I had a liver biopsy prior to my transplant, but my current liver issues are new and unrelated. My scheduled biopsy will be through the jugular vein. This is a first one for me. Hope it goes well.

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.