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Old Tue Aug 27, 2013, 08:11 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Scott,

It truly is uncanny how closely our paths fighting SAA have corresponded. Just yesterday my doctor started me on the cyclosporine taper as well! Also with a 100 mg/day decrease, although I have been on 500 and now will be down to 400.

I asked my doctor the same question you brought up in your last post, i.e. whether cyclosporine may have a marrow toxicity and thereby sometimes reduce counts. He basically said it was possible but not likely.

My largest issue is neutropenia - leukopenia in fact (low WBC across the board). Broadly speaking, I've found reports on line at the FDA website stating each of the three drugs I am on (cyclosporine, acyclovir, amlodipine) very occasionally reduce WBC. So as I taper, I very much anticipate seeing what my WBC will do. My doctor says it is unlikely the Meds are keeping my WBC down, and I know he is statistically correct to say so, but the thought that I could get better with fewer instead of more drugs is sure appealing. We can hope!

One weird thing with my WBC that makes me wonder if the meds could be keeping it down, is that my lymphocytes never recovered post-ATG. They were well over 1000 pre-ATG, now they run about 500-600. I attended an NIH webcast where Dr. Townsley had a graph of lymphoctyes post-ATG (horse vs rabbit). In the graph, those counts are hit long term with rabbit, but not horse. I had horse. My Mom asked her why this could be the case with me, and Dr. Townsley basically said my low lymphocytes are unexpected. So, could something else be keeping them down? Could it be cyclosporine or the other meds I am on?

One more thing, I have found it fairly easy to raise my often borderline-scary low ANC. It rises dependably when I get sick (knock on wood), and I fight off the infection without additional drugs (last month with a sore throat my ANC went up from 640 to 2040, an I was better within a week). And it appears to rise when I exercise - last week my ANC fell to 560. My doctor was concerned and wanted to see me again. Yesterday I jogged 1.5 miles to my clinic appointment, arrived sweating, took my CBC, and my ANC was 1480 (this happened once before when I jogged to clinic). So I'm sort of like a snow globe - shake me up with exercise, and watch the white come out !

...all good signs hopefully that contributed to my doctors decision to try the taper (That and my tired kidneys, high serum creatinine, and high blood pressure - and maybe my frequently asking "can I start the taper yet?").

Of course I too worry about falling counts with a taper, but after 18 months I am very ready to give it a try.

Best wishes on your taper!
Kevin
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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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