Chronic GVHD Skin suggestions?

[BrianFlaigmore]

Hello all,

I am now about nine months post-transplant and it's becoming more clear that I am having some GVHD on mostly my face. It's really not terrible but enough to keep my doctor prescribing me more and more. It manifests as really dry skin and a circular rash on my neck and two blotches under my eyes. Right now I am on Tacrolimus, Sirolimus, and prednisone. The Sirolimus has successfully lowered my platelets, but nothing else (they were in the 100's but now in the low 80's). The only thing that seems to do anything is the prednisone, which we keep going between 10 and 20 mg per day. I know that doesn't sound like a lot but I have become very sensitive to it for some reason. I get night sweats all night long, crazy mood swings, and muscle cramps all the time. I was on 80 mg for almost a year and it didn't affect me as bad as when I'm at 20 mg now.

My question is, has anyone had any success in combating chronic skin gvhd without steroids? I am trying lots of lotions, but sometimes they seem to make my skin have more of a burning dry sensation.
Any information would be great.

Thanks! Brian Flaigmore

[Marlene]

You may want to look into photopheresis for the GVHD of the skin.

http://my.clevelandclinic.org/servic...opheresis.aspx

[selina]

Hello, I am still having GVHD and I'm 2.5 years post transplant. I have been on prednisone for all but 6wks of that time. I am on the other meds too but every time we try to discontinue to steroids, I have a major rash and start having gut issues. I have been weaned down to 20mgs but that was 6 months ago. We have tried every anti rejection meds out there. My next step is the procedure that she is talking about but only a few hospitals do it.

[BrianFlaigmore]

Thank you for the responses.

I hope that they find something for you soon. The bouncing back and forth on the steroids is my least favorite part these days. Do you have side effects from the prednisone? How are your muscles?

For me every time the pred. gets increased, my Dr. puts me on voriconazole, which I am not a fan of, which also makes the tacro and siro numbers jump. Are you in a similar boat?

My doctor does not want to try the photophoresis at this point as it requires a line (is that correct?).

Last week he started me on Tacrolimus cream for the blotches on my face. They have disappeared completely and now we are reattempting a slow taper. I hope it holds! Does anyone have any success or information about the tacro cream? I have heard that it is not good to be on for a long period.

[KathyM]

I don't know how much help I can be - but my husband used the tacro cream for about a month after his transplant. It worked very well. We had a routine - I would wash his back with Eucerin Body Wash, then rinse, then lightly pat it dry. I used paper towels. Then I would slather the cream on his back. He also had the rash on his arms, arm pits and face which he washed and creamed up himself.

He got a lot of relief from the cream. His rash is almost gone now - he just has scaly bits of flakes and they've told him to stop using the cream now.

Best of luck - I hope this helps.