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Do you know what her ferritin level was prior to getting SAA and how many red cell transfusions she's had. Hopefully they did a baseline when they were doing her work-up for SAA. Even though 5000 is high you need to take into consideration how long has it been elevated and that FE is an acute phase reactant protein meaning that it can be falsely elevated from inflammation, infection or fevers. If the high FE is recent, then you have time on your side regarding organ damage.
At this point in her recovery and current problems, I would not attempt to start Exjade. Exjade messed with my husbands kidneys and digestion. He never got to full dose and had to come off of it because it kept effecting his kidneys. If she has had long standing iron overload from hemochromatosis versus SAA then you have another issue and I would explore a more aggressive, short term use of IV desferral. Organ damage usually takes 10 years for an adult. The very young and old may be less.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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