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Old Thu Jul 30, 2009, 07:28 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Well a couple things that jump out at me, but first, when John started Exjade, he had a cbc weekly and kidney/liver function tested monthly. Exjade can effect the BM in a very few so you need to keep an eye on the blood counts. It is also known to cause serious kidney/liver problems so you need to monitor that closely. His doc at Hopkins wanted the kidney/liver to be checked weekly for the first two months.

I would come off the Exjade now especially with such a high jump in the creatinine within one month. Iron is not a problem at this point in treatment. It takes a long time for iron to cause a problem and all the exjade is doing right now is complicating things. IMO, you don't need to consult the doc to stop the Exjade. We did it all the time when John needed a break from it. It's NOT like stopping a blood pressure med. Docs don't always look at the big picture and just prescribe based on labs. Just because there's an oral drug to treat iron overload, it's easy to prescribe it and they do without fully considering the impact it can have on someone just coming out of their ATG treatment. To me, risk of Exjade outweighs the benefit right now. I'm not saying never to chelate to get the iron off but maybe now is not the time. And you may need to look at desferal as an option.

Second. FE is an acute phase reactant. This means that anything can cause it to be falsely elevated especially any inflammation. It is highly unlikely the Exjade dropped the FE by that much in just two months. It takes a long time to get rid of iron. One of the two FE lab results is off and unless you've have well over 40 red cell transfusions, my impression is that the higher number is wrong. John's FE would have huge swings....it would fluctuate between 4000 and 5000. There would 500 point differences month to month when his FE was in the 3000 range.

Please read about Exjade at www.rxlist.com

Sorry to be so direct but I am seeing more and more people put on Exjade as if it were no big deal. Also, Exjade should not be started until you have at least two labs test with FE over 1000.

If you have any other question on Exjade, set up another post for it and other will respond with their experience. I will be away for a few days and won't be able to respond.

Good luck and its great you are checking all this stuff out.

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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