Hi Jon,

I have skin and joint gvhd. My skin is thickening and has an orange peel effect all over my body. I have been told this effect is probably irreversible but I live in hope. My symptoms started in August 13 but took until January 14 to be diagnosed. Until January I was treated for rheumatoid arthritis in the joints but MRI scans showed thAt no arthritis was present.

I'm taking 2 grams of mycophenalate mofetil(cellcept) and 100 mg of imatnib(gleevac) which is a TKI inhibitor normally used in the treatment of CML. Steroids showed no response so I am weaning from these. My next line of treatment should the above not work will be photo pherisis.

I have a friend who took rituximab at about a year post transplant from hodgkins she took this for gvhd of the skin the sunburn, skin shedding type. Rituximab effected her platlett count but she did not have any other side effects.

Majella

Hi Majella
Thanks. I remember when you first noticed joint tightening.
My skin/ joint cGVHD advanced at one year, although I had the skin thing on my shins at about 30 days.
Steriods seemed to work earlier at big doses, but not now.
A problem is that I have a lesion on my back that hurts, but they are fearful of removing it because they are afraid that the damaged skin around it may not hold a graft..
They want to try a light treatment , but NZ being NZ, they've kept me waiting for over six months..
Also, the orange peel areas are now getting scaly
I'll be in the US for three months in June. I get quicker treatment there and they have more options..
Thanks
Jon

Jon,

I have lesions also under my arms they are quite extensive however my skin has no elasticity and wouldn't hold a graft. The only elastic piece of skin I have left is on my butt, other than that area from my head to my toes are rigid.

I also contacted the states in relation to the treatment I am now receiving as my centre was so late in diagnosing my cgvhd, they advised the treatment is correct they may however have done it in different order depending on presentation.

In relation to the scaly skin I would advise moisturising often to try getting rid of this. I have found eucirin the best it's quite expensive as I use 2 bottles a week. Have they said which light treatment they are going to try( puva?). There is a very good webcast on bmtinfonet.org on gvhd of the skin it might be worth listening to.

Majella

Hi again Majella
Do you know of any other place on the net where we can discuss or learn about dealing with skin and joint cGVHD?
I've tried it a few times here over the years and don't get any feedback. It's like you and are the only ones here with it.

Jon,

I was in a local hospital a few weeks ago with pneumonia and every haematologist and oncologist came to visit to look at the tightness and blackening of my skin as they had never seen it before.

Transplant centre has a had a few patients with this over the years but it seems it's very rare and there is little information on it. I got most of my information from the webcast that I posted above. If you go to the LLS support group there is a thread titled Deans latest challenges and he seems to battling the same cgvhd as us but on a much bigger scale.

Majella

Interesting.
When I first got back to NZ about 1.5 years ago, they had me in so at least a dozen senior dermatologists could take a look. I don't think they had seen it before.
I saw my oncologist yesterday and he's put me back to 40 m prednisone and said I would have gotten the Squamus cell lesions anyway. Not likely. He is going to start me on Rituximab in May.
In June, I can visit my transplant center in California.
Sorry that you are having so much of this. Yours is worse than mine. A bit of advice is to protect yourself from the sun. Big hats, long sleeves. Lots of 30+
It might keep the carcinomas away.