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Old Sat Jan 1, 2011, 07:22 PM
Lisa Z Lisa Z is offline
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Join Date: Nov 2008
Location: Ft. Washington, PA (Philadelphia area)
Posts: 111
Hi Chen-

I took Exjade when my ferritin was 1500. It took me 6 months, almost to the day, to get down to the 300 range. Then, I decided to stop altogether, because it had made me nauseaus for 4 out of the 6 months that I took it. Not to the point of vomiting, but just enough to make me feel lousy all day. All I wanted was to get home from work and go right to bed.

Then, my counts continued to drop and are now in normal range. I did ask my doctor about eating foods rich in iron and she said that food was not a concern, because the amount of iron you get from food, compared to the amount you get from transfusions, it was not a factor to be concerned with.

That being said, I still did change my diet. I only eat read meat once a week now, and its been a year for me since I stopped Exjade. (New year's day to New Year's day!). I also am more conscious about other foods, like cereal. Most "healthy" cereal is all fortified w/iron. So, I do read labels now and try to take in minimal amounts of iron. I know I get enough to get the "daily requirement", but I do try to not go crazy with it.

Yes, your Dr. should keep an eye on some other counts that can be affected by the Exjade and your doc should know what they are. You will also have an 800 number to call the RN from the pharmaceutical company, so you can talk to her any time you have a question or concern. They are very good and available 24/7.

I think I was taking 500 mg a day. I am 115 lbs. So, 6 months wasn't too bad considering what other people are saying about their duration w/the drug.

Overall, it was worth it. I simply didn't want my ferritin too high and even though many people wait unti it is much higher, 1500 was where I wanted to start taking it.

Best of luck.
__________________
Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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