Sunday, March 18, 2012

The Skin War Continues, With Other Skirmishes

I haven't been as (literally) flaky for the past week, because I have been more aggressive with the ointment. I am now applying the ointment twice a day, once in the late morning (my sunbathing time) and once before going to bed.

However, I think I'm losing the rash battle at the moment. When I was first prescribed the steroid ointments, a few applications cleared up the rash. Now, despite the twice daily ointment, the rash remains on my arms and legs and elsewhere. Sometimes it itches, and sometimes it hurts.

It is especially bad on my hands, which are red and swollen, and the skin is cracking. This makes it hard to a do lot of things — prepare food, use a computer, brush teeth. Not impossible, but definitely uncomfortable.

Adding to the rash's discomfort is muscle inflammation, mostly in my arms. If I extend my arm to, for example, remove a glass from a cupboard, I get a sharp, searing pain between my armpit and my elbow. When the nurse tried to take my blood pressure at the clinic last Monday, the constriction from the cuff was so painful I tore it off. Some nights, it's hard to sleep because there are no comfortable positions for my arms.

I also have some numbness running up my arms, though I can't tell whether it's related to the rash or the muscle inflammation. It could also be a delayed side effect of chemotherapy. The inflammation is probably another graft vs host affliction. Hooray.

I might be reaching the point where we need to treat the GVHD systemically, even though doing so would interfere with the graft vs. leukemia that we hope is happening. As in so many aspects of dealing with leukemia, there are tradeoffs and often no right answers.

5 comments:

  1. Hang in there, Joe! This, too, you will get through.

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  2. Hey Joe, this all sounds very uncomfortable, I hope it eases up soon or you find some way to ease the symptoms. Not that we expect life to be fair, but jeez, this is a lot of pain to wrangle with!
    Peace,
    Peter

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  3. Oh, so sorry the GVHD is making life so uncomfortable right now. I have noticed, however, that it hasn't affected your Scrabble prowess. So there's that.

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  4. Uggh. Perhaps the GVHD has done what it needs to do, so suppressing it will be fine.

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  5. I would like to sit this GVHD down and tell it to focus its enegeries solely where it matters - on the leukemia. Please send it that message, and I hope the uncomfortable parts of it subside soon.

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