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#1
Wed May 14, 2008, 02:45 PM
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ExJade-side effects?
My sister started this yesterday and I was wondering what side effects, if any, did you have while taking this. How long were you on it?
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Guardian and Caretaker of my 14 year old sister with SAA;Diagnosed Oct. 2007-1 ATG/Cyclosporine treatment-10-07:Waiting on Bone Marrow Transplant-it's down to 2 potential donors;Now it's changing to early MDS-pre Leukemia.; She has now moved with our other sister to see a new dr in Nashville. 
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#2
Wed May 14, 2008, 04:09 PM
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Exjade adverse effects
Hi Mary,
When you look at the adverse effects of a drug the adverse effects always look bad  but most patients don´t have any adverse reactions. I have had Desferal (another chalating drug) since Aug 2007 without any adverse effects  .Here is a link about Exjade: http://www.fda.gov/cder/dsn/2007_fall/nme.htm Kind regards Birgitta-A 69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for 4 days with transfusions, Neupogen 2 injections/week
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#3
Wed May 14, 2008, 04:35 PM
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I saw your other post and from what I can tell she was diagnosed in Oct 2007 and has had only 4 red cell transfusions since treatment. Is that correct? I ask because that seems a bit too soon to start chelating unless her iron/FE is at least at 1000.
Her doctor should monitor her liver and kidney function closely. At a minimum, every month. For the first month, I would encourage weekly labs and a CBC. Many of the side effects from Exjade are dose dependent and go away if stopped or if the dose is reduced. John is only doing 250mg because his creatinine levels kept rising. 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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#4
Thu May 15, 2008, 12:04 AM
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She has only had 4 since living w/ me from Dec 21st. They were giving her tons of transfusions of blood and platelets a few times a week in her old Hospital in another city. They were monitoring her levels and they are too high. We do weekly blood counts w/ a home health nurse and they are sent to her pediatrician and hematologist. Thanks for the help. I was worried about the stomach probems that they said were very common. This is her 2nd day and so far nothing!
Thanks Again!
__________________
Guardian and Caretaker of my 14 year old sister with SAA;Diagnosed Oct. 2007-1 ATG/Cyclosporine treatment-10-07:Waiting on Bone Marrow Transplant-it's down to 2 potential donors;Now it's changing to early MDS-pre Leukemia.; She has now moved with our other sister to see a new dr in Nashville.
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#5
Thu May 15, 2008, 10:37 AM
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That's good. You may want to ask the nurse if they're running Chem panels also with CBC.
The Exjade did mess with John's digestive system a bit. Nausea would become a problem for him after he was on it for a few weeks so he would take a break until it cleared up and then start it up again. Wishing you the best.... Marlene
__________________
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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#6
Thu May 15, 2008, 12:08 PM
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Thanks for advice!
__________________
Guardian and Caretaker of my 14 year old sister with SAA;Diagnosed Oct. 2007-1 ATG/Cyclosporine treatment-10-07:Waiting on Bone Marrow Transplant-it's down to 2 potential donors;Now it's changing to early MDS-pre Leukemia.; She has now moved with our other sister to see a new dr in Nashville.
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