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Old Sun Feb 21, 2010, 08:35 AM
Marlene Marlene is offline
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Location: Springfield, VA
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Exjade FDA warning update

Please take note of the new warning issued by the FDA. Closer monitoring is required.


http://www.fda.gov/Safety/MedWatch/S.../ucm200850.htm
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 90K.
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Old Sun Feb 21, 2010, 12:13 PM
Birgitta-A Birgitta-A is offline
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Exjade

Hi Marlene,
Thank you for info about the new warning about Exjade !

When I started iron chelation after 40 units of packed RBCs my doctor told me that Desferal hardly ever had hematological adverse reactions and up to now I have got Desferal from a small home pump during 4 days with transfusions without any adverse effects. Desferal doesn't work so well so last fall I tried Exjade too.

I started with 250 mg/day with monitoring each week. I increased the dose once a week to 2000 mg but then my WBCs decreased and I stopped taking Exjade.

Then I tried 250 mg/day during 2 months and now 500 mg/day with blood work every week. My liver and kidneys manage very well and the WBCs are holding this far . The ferritin value is slowly decreasing.

My platelets are quite low (no correlation with Exjade) and I hope to be able to get Promacta like Kirby but I can't participate in any of the trials for MDS patients because I have very severe bone marrow fibrosis so I am excluded from the two trials for MDS patients.
Kind regards
Birgitta-A
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Old Sun Feb 21, 2010, 08:22 PM
Marlene Marlene is offline
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Hi Birgitta-A,

John couldn't get past 1000mg/day of Exjade. Eventually he had to stop it all together because his kidneys were being effected by it. I am glad you found a dose that's working for you and that your doctor is taking the time to monitor your progress correctly. We played with dosing also but even 500 mg caused problems. John is still getting phlebotomies to reduce the iron. His last FE was around 600.

Take care,
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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 90K.
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