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Hi Hope - my ferritin was around 2200-2500 as I recall. It took about a week to get approved for Jadenu - an improved, less toxic version of Exjade. They approved Exjade initially, but not Jadenu. I'd talk to your doctor and ask for Jadenu instead and fight to get that approved - there is an appeals process. You may need a more informed doctor to make the argument on your behalf. My doctor also said Novartis had a program to help pay/provide for the drug if your insurance won't. Look at the Norartis website or ask your doctor (or both). If you have found a more specialized doctor at Emory or elsewhere that person would probably be most informed - good reason for finding one now if you haven't already. It takes a while for the drug to work, but if your waiting around for a month or so I think it'd be good to get your iron down as much as possible. Iron overload can also be contributing to some of your heart problems and lowering iron is associated with better transplant outcomes. Good luck - and thanks for your good thoughts.
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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