[Lisa V]

Steven, I just want to echo what some of the others have said about creatinine. Our doctor becomes concerned any time Ken has a reading over about 1.4. He told us that at 1.4 his kidneys are only operating at about 75% efficiency, which is not great but it's liveable. Anything over that could eventually lead to kidney failure, so they monitor it very closely. We try to keep it between 1.1 and 1.3, and he's had to drink LOTS of water to do that. He's only taking 175 mg. CsA per day and weighs about 180.

I suppose it depends on what your father's baseline was too, but the fact that his doctor was not paying much attention to this before you pressed the issue is rather alarming to me. Yes, we do have to be our own advocates, but in my opinion he should never have allowed it to climb to 2.8 without saying something!

We also asked our doctor what signs we should look for that his kidneys were starting to slow down. He said that apart from the test numbers there were no symptoms, at least until it gets really severe, and you don't want to let it get that far.

I guess Ken technically falls into the AA/MDS confusion category too, but we've been treating it as AA, just with a chromosomal mutation which usually indicates continued CsA dependency. That's why we're still doing the balancing act rather than attempting to taper again (he relapsed the first time we tried it). Can I ask why your father is being treated with CsA only, instead of the usual ATG/CsA combo? CsA is not normally part of the MDS arsenal, I don't think, and for AA it seems to work best in conjunction with ATG. I'm thinking he might not have required such a high dose if he'd had the ATG to kick-start the process, but maybe I'm interpreting that wrong. I'm not sure I really understand what they're trying to do here.