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Hi Jen,
That's the first time I heard someone have such a severe reaction to exjade. I hope your doctor has alternative chelating treatments for your son that he can tolerate better.
My dad's ferritin is currently below 800, so we stopped the exjade for now. Creatinine is down to 1.9, which is better than before. However, we've been getting 2 units of blood each week, so the ferritin level may rise again fairly quickly.
Thanks for the tip about chlorhexadine! I'll definitely be on the lookout for that. I think some over the counter mouthwashes have it, otherwise I'll ask my doc if he can prescribe peridex.
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Son of 70 yo; diagnosed MDS 11/2008, treated with vidaza; diagnosed AA 3/2009, treated with ATG, cyclosporine and exjade; rediagnosed MDS 7/2009, restarted with 2 cycles of vidaza, but currently halted treatment of both vidaza and exjade due to severe effects from the drugs.
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