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Old Fri Jul 24, 2009, 01:07 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Steven,

I'm also an AA/MDS mix and am similar in weight. My doctors had me on 200 mg twice a day to try to get a target trough of 200. However, my kidneys couldn't take it. So, I backed way down to 125 twice a day. My kidneys still weren't happy, so I lowered to 100 mg twice a day. It took almost a month for my creatinine to come down because of the kidney filtration issues. During this time, the Cyclosporine was still not clearing out of my system rapidly. So, my trough remained elevated. Now my trough is low again, but we just ignore it. I've read articles that state that trough measurements may not be the best guide for proper dosage for all people, given the newer micro-emulsion formulas of Gengraf/Neoral. They think that the peak readings, 2 hours after dosage, may be more telling for some people.

Watch your father's numbers. He's still exceeding the 5 mg/kg/day dosage. You may want to discuss backing down farther while the Cyclosporine clears out of his system. He can always go back up later, if necessary.

I'm curious...has your father's red counts been falling? My red blood cell counts have been on a steady decline before I even lowered the Cyclosporine dosage, and I'm now wondering/hoping my decreased kidney function may have had something to do with it.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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