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We were thinking the same...
In the past, John's FE never dropped that quickly before. It would creep down at an snails pace and it always bounced up and down. So we were pleasantly surprised to see it consistantly trend down. But then it really dropped.
John is no longer transfusion dependent so it may be a good idea to stop.
Per the Exjade drug insert/patient info.....
"Serum ferritin should be measured monthly to assess response to therapy and to evaluate for the possibility of overchelation of iron. If the serum ferritin falls consistently below 500 mcg/L, consideration should be given to temporarily interrupting therapy with Exjade. (See DOSAGE AND ADMINISTRATION.)
In the clinical studies, the correlation coefficient between the serum ferritin and LIC was 0.63. Therefore, changes in serum ferritin levels may not always reliably reflect changes in LIC."
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Interesting that they use < 500 as the cutoff once you're on it versus the level stated in the inital dosing info. Seems to be conflicting.
Thanks for the info.
Marlene
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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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