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Ferritin is not an accurate
indicator of how much iron is in your system. Once it's elevated, over 1000, then you will see it bounce around alot. It's an "acute Phase reactant" meaning that just about anything can effect the reading. Any inflammation, infection, or even something as simple as how they handled the blood draw can effect the results.
On the desferal, I can't remember the dosage John was on but he did a sub-Q over 8 hours. For deferal to be really effective, you need to do it over multiple days at slower rate. When John had his central line in, he used that. John would do 3 weeks, 7days/week. He would then take one week off. His urine did turn orange when he was on it. You can do 24 hour urine sample to measure the amount of iron being secreted.
Here's a link on that my help you. You can also check the drug dosages at www.rxlist.com
http://sickle.bwh.harvard.edu/dfsc.html
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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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