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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Sun Sep 27, 2009, 09:36 AM
Marlene Marlene is offline
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New Exjade warning

Please take note of the latest FDA news on Exjade. They are looking into increased adverse effects in those over 60 and those with MDS.

http://www.fda.gov/Safety/MedWatch/S.../ucm183840.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 146K.
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  #2  
Old Sun Sep 27, 2009, 02:00 PM
Birgitta-A Birgitta-A is offline
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Exjade and adverse reactions

Hi Marlene,
Thank you for this info! Since Desferal isn't working so well after 2 years I am now trying Exjade. We started with 1 tablet/day first week, 2 tablets second week etc. My creatinin has increased a little (blood work every week) and the platelets have decreased a little so I don't know if I can continue with Exjade. I feel Ok and have not had any other adverse reactions.
Kind regards
Birgitta-A
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Old Mon Sep 28, 2009, 10:24 AM
Marlene Marlene is offline
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It's so good to see that your doc is taking a conservative approach and drawing labs weekly. I wish more would. So many start patients on the "standard" dose and don't bother to run labs for a month or more.

Even though Exjade is easier to take since it's oral, it comes with higher risks. John could never get to full dose of either Des or Exjade.

Hope this works for you and get some of that iron off.

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 146K.
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  #4  
Old Mon Sep 28, 2009, 02:39 PM
Birgitta-A Birgitta-A is offline
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Exjade

Hi Marlene,
My doctor is a specialist in MDS and he told me more than 2 years ago that Desferal is a better drug for most MDS patients due to adverse reactions leading to decreased counts both with Exjade and Ferriprox (not approved in the US).

The drug companies tell us that many MDS patients get lower counts due to their disease and not because they can't tolerate Exjade or Ferriprox. We will see what the FDA is going to find - hopefully many of us will be able to take Exjade but it must be carefully monitored.
Kind regards
Birgitta-A
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