[mausmish]

Hi Donna,

I know what you mean about posting. Did your PMR predate your transplant? My mother had PMR and was on prednisone for 20 years. Early on, she also had temporal arteritis and was on 60mg Prednisone. She ended up in a wheel chair for nearly a year but was fine again once the Pred was tapered back down to 10mg. Her rheumatologist wanted to taper her further but each time she went below 10mg, she became weak and was in pain. She ended up staying on 10 after many attempts over the years. I understand why you want to be off of it but you may need it for the PMR. Perhaps as a test, try increasing to 10mg temporarily (a few weeks) and see if that helps the weakness? If it doesn't help taper back down and try to get off it. If it does help, taper to the point where the weakness/pain recurs and find your ideal level. When you taper, do it slowly, 1mg every week or two.

For GVHD, are you near a facility that offers photopheresis? It didn't help my skin and eye GVHD but it worked wonders for some of the other patients who had liver, gut, and/or lung GVHD. It may take six months or more to work but does not have the nasty side effects like steroids and immunosuppressants. Twice weekly is common to start and it takes about 4 hours. If you have improvement, the time between visits can be increased. If you have good veins, a port is not required.

My doctor also said high ferritin can be from GVHD inflammation and was not worried about it - did not even treat. It dropped on its own eventually.

UVA1 phototherapy has been most helpful for my skin. It takes only 15 minutes per session.

There's more detailed information in my blog, http://mausmarrow.com..

Congratulations on your upcoming 3rd rebirthday! The journey continues.

Karen