Thread: serum sickness
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Old Mon Apr 20, 2009, 03:16 PM
Hawaii Bill Hawaii Bill is offline
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Join Date: Jun 2008
Location: Waikele Hawaii
Posts: 100
Recovering the counts

Hi,

My doctor and I were thinking it was time for me to go thru a second ATG treatment early last year. I decided that I wanted to get into a clinical trial if I could, and found a trial using Sirolimus instead of ATG. I went to UCLA, one of the trial sites, and was evaluated by Dr Paquette. He reviewed my medical records for about 30 minutes with me, and suggested trying a "therapeutic" dose of Cyclosporine (CsA) for a few months to see if it would have a response.

This made perfect sense, because my disease was still moderate AA (it was VSAA before my first ATG treatment) and I had the "luxury" of time to see if it worked, and I knew from all of the reading I did that CsA alone can be an effective treatment (it is just better when used with ATG).

So I started on CsA 200mg twice a day in June 2008. I had a red blood tx in July. By October, my counts stopped declining, and now they are rising very slowly. Last week my hgb was 11.3, white was 4.4, platelets 40, and ANC 2.0.

THANKS, DR PAQUETTE!

The thing that worries me now is what will happen when we start to taper. But at least I avoided another month in the hospital and the risks associated with ATG and Prednisone. CsA is no angel either, but I'm blessed that I can tolerate it. I lost a lot of hearing in one of my ears in October, and my hemo thinks it could have been the CsA. Paquette disagrees. Who knows? I am in my late 50s, and hearing loss happens.
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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