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Old Wed Apr 20, 2016, 12:03 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by Greg H View Post
Important Note on Medical Terminology: When doctors say a drug is "well-tolerated" that means it is "unlikely to kill you outright." That does not mean it will all be milk and cookies.
Ha Ha! I actually never thought about it that way, but it makes sense!

Like everyone else here, I am very sorry to read that your disease has come back and wish you continued strength in your fight.

I thought that it was interesting that you blamed prednisone for your current situation. When I first was diagnosed with very low but stable blood counts, my doctor tried 2 weeks of 100mg/day prednisone to see if that had any affect. My health and counts tanked during the trial and so I also think that it was a factor in my disease progression. My theory (and I always have one) is that in immune mediated bone marrow failure, the rogue T-cells are going crazy attacking the body's cells. Prednisone lowers the bodies immune system, but doesn't kill off the rogue T-cells. So whatever fight the body had left against the those bad cells, it loses. Just a theory...

I also have pancreas issues. Are you doing Pancreatic Enzyme Replacement Therapy?
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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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