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Old Fri Feb 3, 2017, 02:15 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Kelly,

Your sister is lucky to have you as her advocate. You really need an expert in AA, especially since your sister is having complications. Ideally your sister would be transferred to Dana Farber. Alternatively, you could schedule an appointment there yourself for your sister and establish a rapport with the AA expert. Then you can more easily direct the treatment decisions with her local doctor. Many will respond to phone calls and emails once you have had that initial visit.

It looks like your sister was on 12 mg/kg/day of Cyclosporine. I was started on that dosage right after ATG as well but built up to a toxic level fairly quickly, as measured by my trough readings. If your sister starts on cyclosporine again, be sure that they check her 12 hour trough level fairly frequently at first.

Typically cyclosporine is continued a minimum of 6 months after ATG. The steroids are typically tapered off as soon as the danger of serum sickness has passed (3-4 weeks post ATG??) It is the cyclosporine and not the steroids that helps while the marrow heals. You will learn patience with this disease. It may take 3-9 months before you start seeing a rise in your sister's blood counts.

Here is a good article to read on the standard treatment of AA:
http://www.bloodjournal.org/content/...o-checked=true

Good luck!
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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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