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Old Fri Dec 23, 2016, 01:05 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Ellen,

What was you tapering schedule for cyclosporine? How long have you been off of the drug?

I remember feeling energized while tapering. So, being extremely tired is concerning. How often do you get a CBC? What were your numbers last time?

I also haven't had my PNH rechecked regularly, but have heard that it should be monitored yearly. Given your symptoms, I would discuss getting your LDH and PNH rechecked with your doctor. You may also want to check your iron levels, if you haven't recently.

My doctors don't think it is necessary to do a BMB unless something has changed with my counts.

Hope this helps!
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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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