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#1
Thu Nov 21, 2013, 12:29 PM
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Slow relapse after slow taper
It looks like I am joining the relapse club as well. My story is a little different. I tapered off cyclosporine very slowly- over the course of years! My platelets started decreasing very slowly during this time. I was completely off cyclosporine for about 9 months, during which time my platelets more steadily declined. My doctor is now restarting cyclosporine, albeit at a low dosage. Hopefully, this will stop the slide, and then I'll be able to analyze this more positively retrospectively. I've always got my theories…
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58 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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#3
Thu Nov 21, 2013, 11:21 PM
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Do you know if entrombopag can be given outside of a clinical trial/NIH?
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58 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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#4
Fri Nov 22, 2013, 09:48 AM
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The drug in Promacta is spelled eltrombopag, with an L.
The FDA approved it in November 2008 for "treatment of thrombocytopenia in patients with ITP who have had an insufficient response to corticosteroids, immunoglobulins, or splenectomy". The FDA revised the labeling in February 2011, December 2011, and November 2012, but always for the same condition. Source: Promacta Approval History. I conclude that any other use in the U.S. would be "off label".
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#5
Fri Nov 22, 2013, 12:42 PM
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Sorry, yes, I spelled it wrong!
I think if only your platelets fall, and not your red and white blood cells, you could technically be diagnosed with ITP rather than a relapse of Aplastic Anemia and perhaps your doctor could prescribe the drug for you. Of course you'd need to talk to him/her about that first.
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#6
Sat Mar 8, 2014, 03:40 PM
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Hi Hopeful,
What was your new dosage of cyclosporine and actual blood counts?
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2009 august diagnosed MDS or AA, cyclosporine began,ALG (rabbit) treatment 2009 december, After 2010 April cortizone began, platelet transfusion free for 3 months. 2011-2013 Hip replacements with low platelet. 2018 splenectomy.
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#7
Sun Mar 9, 2014, 12:43 PM
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Quote:
My platelets slowly fell from 135k to 80k. My RBC and WBC are low normal. Since restarting cyclosporine, my platelets have stopped falling, although they aren't rising yet either.
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58 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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