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Old Thu Mar 11, 2010, 12:05 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Lamilu,

Some of the older protocols used much higher doses of Cyclosporine (12 mg/kg/day) for 6 months and then stop abruptly. Some newer protocols follow 5 mg/kg/day for longer lengths of time (years). Your mother's protocol seems like something in between. Be sure her Cyclosporine trough level is being checked frequently to ensure it isn't exceeding the maximum and that she is getting a comprehensive metabolic panel to ensure her kidneys and liver are tolerating the dosage. It will may take a few weeks for the Cyclosporine to build up to toxic levels, so check frequently.

I would ask the doctor what the long term plan is for her Cyclosporine regimen. I've heard that dosages above 5 mg/kg/day provide much toxicity with little added benefit. Be proactive about checking her troughs and metabolic panels and requesting to lower the dosage if concerns arise.

Stay positive!
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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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