[Laura]

(Sorry but another cheat post...a copy and paste from the update I just put on my caringbridge site.)

Since I last wrote, I have basically been focusing on combating the GVHD I have been fighting in multiple areas.

My Mouth:
After starting the oral Decadron from Dana Farber, basically a steroid I swish around in my mouth for about five minutes and then spit out, my mouth did get better. Not 100 percent, but better. However, the past few weeks, it has gotten worse. Actually the worse yet. Thankfully these past few days, it has gotten a tiny, tiny bit better. At its worst it was as follows: Severe dryness due to my salivary glands having been attacked by my donor's immune system. I was started on Salagen 5 mg four times a day as needed to try and force my salivary glands to make saliva. This has seemed to help. My gum tissues are red and swollen and are painful. I have some sores that bleed at times. I also have white/red patches. My lips, mouth, throat burns whenever any food or liquid is put into my mouth. My tongue also has sores and is sore and burns too. I require pain medication to even force myself to drink and eat hardly anything. Nothing tastes right or good. As a result of these changes, oral Prograf was also started last week. Prograf is an immunosuppressant medication. I basically mix the oral decadron and prograf together and swish it around in my mouth for about five minutes. Then I spit it out.

My skin:
My skin still flares and swells and turns red. However, instead of head to toe redness, it is more of a lacy red, rash. My cheeks and ears still can turn bright red though. My arms do not seem to be flarring currently but I also wear long sleeve UVA protection shirts. Per Dana Farber, this will take awhile to get better, but I am seeing improvement. I still have to avoid the sun, heat, UVA as much as possible. I also basically only wear UVA protection clothes too.

My Sirolimus medication has been increased a few times, in order to get my blood levels adequate. I currently am taking 4 mg daily.

I was also having severe knee pain and there was a fear of avascular necrosis occurring (side effect from Prednisone). This was checked out this past week. Thankfully, I do not have this. They are thinking because my knees swell when my skin flares, that the swelling puts pressure on certain parts of the knee and prevents normal movement or something like that.

Since I have been on high dose Prednisone almost three months and with the fear of the side effects, they are trying to wean me slowly off the Prednisone. About a week ago I dropped from 60 mg to 40 mg daily. And this week we are keeping it at this level. So hopefully nothing flares and my platelets don't drop. (Last level 103).

All my other counts remain normal.

That is a very basic rundown of where I am at now. Sorry for the delays in postings. It has been pretty crazy here.