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Old Sun Jun 1, 2014, 05:43 PM
Amz904 Amz904 is offline
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Join Date: Apr 2014
Location: Atlanta, GA
Posts: 13
TonyBegg,

The cyclosporine that I would receive in the hospital had the worst smell! They always gave different brands depending on what the hospital pharmacy had in stock, so some were worse then others, and the smell would linger around for a while. Luckily, the kind I get at my local CVS pharmacy at home has little to no smell! This makes it way easier for me to handle. The type I get comes in a box and says: "cyclosporine capsules, USP [modified]" and is by Watson Pharma, Inc.

From what I understood from my doctor, the cyclosporine just helps to continue to suppress the t-cells (which is whats attacking the bone marrow in the first place) Since the ATG only stays in the system for roughly 3 months, most remain on cyclosporine for a while after that to continue to suppress the t-cells to allow the bone marrow the time to recover.

You mentioned only being on cyclosporine for up to 6 months, i'm not sure if the case is different in PNH since I'm only really familiar with AA, but doctors tend to be very cautious when it comes to tapering the dose and people tend to remain on a low dose of cyclosporine for years sometimes. A quick taper has sometimes lead to a drop in counts, requiring to raise the dose again or in some cases repeat therapy. So this is something you may want to look into!
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