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Old Sat Jan 1, 2011, 01:42 PM
gipper gipper is offline
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Join Date: Sep 2010
Location: gainesville, GA
Posts: 10
Hi Cheri,

Thought I'd take a stab at answering some of your Exjade questions.

I don't know of any contraindications re taking Exjade while receiving Vidaza; however, I did take Exjade through four cycles of Dacogen (nothing exceptional resulted, but when taking more than one drug you can't be sure what is causing what)
Factors that increase one's ferritin count are at least these: 1) diet 2) RBC transfusions 3) acute phase reactions (inflammation or infection). Diet is minor when compared with transfusions. One unit of packed red blood cells contains about 250 mg of iron so if transfused with two units you would receive 500 mg of iron. I calculated that it would take me 20 days to remove that same amount of iron based on taking 1500 mg of Exjade per day - my weight is about 170 pounds. So if you are getting transfusions, they are your largest contributor to an increased ferritin count.

Side effects can be substantial as some folks have died taking this drug, but your doctor knows what to watch for namely kidney and liver functions. Among these is creatinine, as mentioned by Birgitta. There are specific guidelines for allowable increases in this parameter. The only side effect that caused me grief was diarrhea when at the highest dose prescribed for me - 2000 mg per day. Again that dose is not totally meaningful without taking into account one's weight. Nonetheless I experienced two incidents of uncontrollable diarrhea and then informed my doctor I would not take that high a dose again. I did not have noticeable side effects as doses of 500, 1000, or 1500. I took Exjade for about 20 months. The dosing was discontinued when my serum ferritin fell below 1000 providing it was a time of transfusion independence.

I have no idea how long it will take to lower your count, but I could estimate the number of days if I knew your weight, starting SF count, dose of Exjade and whether or not you are getting transfusions at this time. I plotted my SF vs number of transfusions and learned that you can see a trend in the long term, but things are not too crisp in the short term.

Hope my reply is helpful. Have a happy new year!
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gipper (AKA bill f), 76, ITP 11/00, MDS RA 1/05; myelodysplasia/myelofibrosis non-classifiable 4/09; revlimid ineffective; Dacogen positive; Nplate helpful, thalidomide better for low pltlt count; splenectomy 5/11; RAEB-2 9/11; Vidaza pending
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