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Old Wed Mar 16, 2011, 08:10 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Yes, Google is a wonderful thing, isn't it? I had to look it up too!

I'm with Hopeful. I'm not sure why your doctor felt the need to raise the dosage from 300 mg. When you consider how much fluctuation there can be from peak to trough levels, it's really hard to get an exact or consistant reading. Ken once accidentally did a peak reading, and it was 600 points above his average trough. In addition, there really isn't a well established target number for AA patients. Our lab uses the recommended level for kidney transplant patients, which is 56-266. That's quite a range, and your earlier readings would fall neatly into that, Ryan.

I think your suspicion that you may be seeing cause and effect where it doesn't necessarily exist is probably true. Now, if your counts rose and fell every time you increased or decreased the dosage, then I'd say you had a good reason to try to keep it as high as possible, but otherwise I'd try to find a median level where you can allow your counts to recover at their own pace while avoiding overtaxing your kidneys. Cyclo comes in 25 mg capsules too, so you can fine tune it rather than having to go with 300 or 400.

I once asked Ken's doctor how important it was to maintain a therapeutic CsA level. His answer: "Not important at all if you end up losing your kidneys." It helps to keep things in perspective.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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