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Old Sun Sep 6, 2015, 11:34 PM
curlygirl curlygirl is offline
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Join Date: Jun 2013
Posts: 151
Hello, everyone! Thanks for following me so far! My son is starting to relapse. We dropped his dose of cyclosporine to 25 mg morning and evening and very quickly his platelets fell from 150k to 44k. They are now in the 30s. His Hemoglobin has fallen in the last 6 weeks from 12.7 to 11.0, and I'm sure is lower: he went back to school and has the light purple bruises across his legs. We've raised the dose to 150 mg of cyclosporine day and night (at this level his trough concentration is between 200-300) but the bruises are still there. Hoping for the best as we removed his port last November. His doctors and we were again disappointed - we were at the visit to actually take him off of cyclosporine completely - he had a tan from swimming all summer and looked fantastic. People still tell us how great he looks. I'm ready to go to BMT but his doctors and my husband want to try a 2nd dose of horse ATG and never go below 50 mg of cyclosporine day and night for the rest of his life. My son really wanted to go off the cyclosporine. HEveryone please think good thoughts that the cyclosporine will work - mainly because he had such a bad reaction to the ATG last time (hives, fevers, and then hypothermia) that I'd rather him not go through it again.
Thank you!

Last edited by curlygirl : Sun Sep 6, 2015 at 11:53 PM.
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