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Old Tue Sep 17, 2013, 08:59 AM
worriedaboutmom worriedaboutmom is offline
Join Date: Sep 2013
Location: Traverse City, MI
Posts: 2
Your experience with Cyclosporine???


My mother was diagnosed with AA in February of 2012. Underwent ATG treatment in April and was then put on cyclosporine. Her platelets were good for awhile (upper 90s), then her doctor weaned her off over about 2 months. As expected, her counts began to decline steadily. In March of 2013, I took her to a specialist at the Cleveland Clinic, who promptly put her back on cyclosporine. He also noted that it typically takes 4 to 6 weeks before your body responds to cyclo. Yet again, after my mom's platelets leveled off for a few months, her doctor weaned her off of cyclo. About 2 weeks later, her platelets took a nosedive. Which is where we are today. She just had a platelet transfusion and is back on cyclo. However, her platelets aren't really going up. I'm thinking its because, as the specialist said, she hasn't been back on cyclo long enough for her body to respond. My question - sorry for the lengthy post - is if anyone has had a similar experience with cyclo in terms of the response time? Any guidance would be so appreciated! She's really worried that this is a relapse...

Many thanks in advance for anyone taking the time to respond.
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Old Tue Sep 17, 2013, 11:30 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 721
I was told that it takes 2-3 months for the cyclosporine to build up in your system. How long was she off cyclosporine before her counts declined and how long has she been back on it?

The current research supports slowly weaning from cyclosporine over many months (not weeks). If she relapsed after the first wean, I am surprised that they tried weaning her again so quickly. Her bone marrow must still be fragile and reliant on the cyclosporine to fight the fight. Have they done another BMB?

Hopefully she will respond again and not have to go back to ATG! Are her platelets responding to the transfusions?
53 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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Old Wed Sep 18, 2013, 09:04 AM
worriedaboutmom worriedaboutmom is offline
Join Date: Sep 2013
Location: Traverse City, MI
Posts: 2
Thank you for your response.

She had been completely off of cyclo for almost 3 weeks, and has been back on for about 2 weeks. We were all surprised her doctor weaned her off but he was worried about the side effects....

She did have a BMB in March, which was negative. She had a platelet transfusion last Friday, and her counts were at 67k right after. Three days later, her counts had dropped to 37k. She goes in again fr a CBC tomorrow, so we're all anxious to hear....
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