From: Lisa
Date: 25 Oct 2004
Time: 02:49:45 -0400
Remote Name: 64.75.148.202
Hi, everyone. I recently discovered this site, and it's been a wonderful source of information. My husband Ken was diagnosed SAA in late july of this year. (see story #509 for more background). He had ATG/cyclo/pred, also gets neupogen and procrit. At 3 months his counts look hopeful: RBC 2.95, Hgb 9.6, WBC 2.7, neutrophils 1.1, platelets 29, hasn't had a red cell tranfusion in a month, he got platelets a week ago, but only because he had a port put in. The problem? His creatinine levels keep spiking, indicating his kidneys are not liking the cyclosporine. A month ago it reached 1.9, and the doctor knocked him down from 900 mg/day to 500. Things evened out for a couple of weeks, but then on his last visit it spiked again, this time to 2.2 (supposed to be 0.5-1.2)so he's now down to 200mg/day. His regular doctor hadn't been monitoring the cyclo levels in his blood, I'm not sure why, but we saw a different doc this time and he ordered up a test. The results came back @800. The doctor who called with the results said there isn't really a recommended level for AA, but for kidney transplant patients they aim for 200-300. I'm worried about what will happen if he has to stop the cyclo cold turkey. I know you're supposed to stay on it 6mos. and taper gradually, and that some people have to maintain a low dosage indefinitely to keep from relapsing, I'd hate to see that happen when he's been doing so well lately. Has anyone had experience with this? What can we expect?
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