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Hi JEZ,
Did your kidneys recover after stopping Neoral? Are your creatine and GFR again at a safe level? If so, I wonder if you can continue Neoral in parallel with a much lower dosage. I've read that some people need as little as 25 mg bid to keep from relapsing. Of course, your kidneys must be recovered to try this experiment!
Also, I'd check to see if your doctor will let you monitor your chemistry panel more frequently while changing medicines or dosages so that you can catch the effects earlier.
I hope it is just a temporary slide while your body adjusts to the new meds. Hang in there!
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58 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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