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Old Tue Jul 1, 2014, 04:47 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Hi Sue,

I am glad to hear that your husband's counts have improved so well with the Eltrombopag! I've seen promising reports from NIH that patients can maintain their counts after the Eltrombopag is stopped.

I was very interested in Eltrombopag myself while waiting to get better, but no, I never took any other treatment for SAA after the ATG & cyclosporine. I exercised a lot at high elevations, even when I felt awful, perhaps that has helped in some way (I'd like to think it has, but as you say, this disease is such a mystery).

I regard my immunologist/hematologist's opinion very highly on these matters, and he basically says that sometimes an immune-mediated condition such as SAA can work itself out of a person's system (once the aggressive life-saving treatment on the front-end has done it's job. Without that, as we know, SAA is almost always fatal).

In other words, as I have continued to get better 2+ years after the ATG and during the cyclosporine taper, he does not think my recent improvement is due to a very slow response to treatment. More likely, he thinks that the immune-mediated process that caused my SAA is finally "burning itself out", at this point more-or-less on its own, for reasons not entirely understood. And this immune-mediated process can wax and wane over time, differing from patient to patient (of course, we passionately wish for it to wane so that our counts rise & our marrow stays strong & productive!).

I wish the best for your husband's health and continued success as well.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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