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Old Fri Jun 17, 2011, 10:24 AM
Lisa Z Lisa Z is offline
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Join Date: Nov 2008
Location: Ft. Washington, PA (Philadelphia area)
Posts: 111
Exjade is still fairly new. I know when I was on it a year ago, the RN from the pharma spoke with me every month and I had, as you do, a direct 800 number that allowed you to reach someone 24/7. That in itself tells you that the drug has possible negative side effects. (like all meds).

If it says not to use if platelets are <50,000 I think I would pay some attention to that. Your ferritin is not so high that you can't stop at this point and see if that makes a difference with your CBC counts..... I think that is what I would do. Go off it for a bit, see if your other counts go up and then determine if there is a direct correlation or not.........
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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