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Old Sat Apr 9, 2011, 03:55 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
I would ask why they'd lowered the dosage, Edith.

I forget what the target formula is for mgs/lbs. of body weight, but it's just an estimate. The actual cyclo dosage often needs tinkering to get it right. It doesn't necessarily reflect how well the body's doing, just differences in individual metabolism, as well as the amount of side effects.

Ken was started out at 900 mg/day, but we've had to reduce it several times since then. He's currently on a maintenance dosage of just 150 mg/day, which is all he can tolerate without having creatinine and blood pressure issues (common side effects).

His doctor had initially been relying on creatinine rather than blood CsA to determine if he was tolerating it okay, and that wasn't a problem at first, but when we actually asked for a CsA test it came back way high (885, target level being 56-266), so it was quickly cut to 500/day, and then down from there as his kidneys started to struggle with it.
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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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