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Old Wed Feb 1, 2017, 01:11 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Kelly,

Is your sister being treated by a doctor at a facility that specializes in AA? This is very important because AA is such a rare disease. If she is not, it would be wise to consult with one immediately in your area. Alternatively, NIH is not that far away.

1000 mg/day is an extremely high dose of cyclosporine. A more typical dosage is 5 mg of cyclosporine/kg of body weight/day. So 1000 mg/day would be a typical dosage for a person that weighed 440 lbs.

A high dose of cyclosporine is 10 mg/kg of body weight/day. 1000 mg/day would be considered a high dose of cyclosporine for someone who weighed ~220 lbs.

How much does your sister weigh? Have they checked her cyclosporine trough levels to see if she is at a toxic dosage regardless of her weight? How long will she be on the high dose of steroids?

Your sister's situation doesn't sound typical to me. I would seek out a second opinion ASAP.
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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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