[Laura]

I don't even know where to start with this post or even where to begin to fill people in. So much has occurred and yet so much hasn't been figured out and it is frustrating.

My counts remain good minus my platelets in the low 50's. Being help up by Prednisone? Who knows? Low from Sirolimus? Who knows? I think both.

My skin remains a complete mess and my mouth. Although it has been improving, my quality of life is practically nonexistant.

The past two months, I have been forced to live in complete darkness. No lights, no UV, no sun, only leaving the house for major apts in order to barely survive the sensitivity to UV. Over the past few weeks I have noticed an improvement; however, how long must I live like this? I am to the point of that's try whatever drugs are out there and just get this under control so I can have my life...a life...back.

While my mouth is better, my mouth is also awful with GVHD. It is so sensitive and is a constant guessing game at what can cause it to flare.

But the biggest thing that really has been causing me misery and I feel is getting worse is this God awful heat intolerance I have. I feel if this could get under control my quality of life would be so much better. There should be no reason why I can't walk around the house for 10 or so minutes without become so overheated and swelling up that I physically have to help my body cool off. We barely use our heat and it is now winter. I can't stand any heat...heat from cooking...body heat...etc...

My gut remains one hundred percent normal since being on
Prednisone and Sirolimus

Currently I am on 40 mg of Prednisone daily, 5 mg Sirolimus daily, Oral Decadron swish and spit, Oral Prograf swish and spit, Salagen prn, oxy for mouth pain, etc....

I welcome any advice.
Laura