Desferal versus Exjade for high iron overload

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Desferal versus Exjade for high iron overload
« on: July 25, 2012, 11:32:39 AM »
Hi everyone,
My daughter (adopted November 2011) has a very high ferritin.  She is currently taking Exjade, 500 mg daily spilt into 2 250 mg doses.  She weighs 33 lbs so seems to be on an appropriately high dose.  Her ferritin continues to remain very high.  From what I have read here, it looks like it can take up to 2 years for Exjade to impact very high iron overload. 
My question is, since it is so high, is it better/more effective to switch to Desferal until it is better controlled, and then resume Exjade?
She will have a ferriscan in September.
Thanks,
Cindy

Re: Desferal versus Exjade for high iron overload
« Reply #1 on: July 25, 2012, 02:21:15 PM »
Hi,

The exjade dosage does not seems too high (given the ferritin level is very high and she is 33lbs). My daughter is 50lbs and she is taking 375mg (please note her ferritin is very low). It is commonly noted that ferritin usually goes high when somebody starts Exjade. This is usually due to the fact that exjade chelates the iron from the organs, sends ferritin into the blood, resulting higher ferritin levels.

Ferritin levels are just indication of iron in the blood, it is not an appropriate measure to see iron in the organs. Ferriscan is a good measure after all to measure iron in the liver (glad you are doing it).

I would wait until ferriscan results. Exjade is easy to administer and easy to be compliant. Desferal is not easy to administer on children……

My two cents
Regards.

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Offline Andy Battaglia

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Re: Desferal versus Exjade for high iron overload
« Reply #2 on: July 26, 2012, 01:51:25 PM »
I agree with CF. You cannot judge the results of Exjade by ferritin readings, alone. The scans are the most important tool and will show the true progress. The dose is correct and I would expect a steady progress is made despite the ferritin level. Chelation compliance is essential and as CF stated, desferal is not an easy proposition for young children and this will almost always lead to chelation sessions being skipped. It is much easier to assure 100% compliance with the oral drug. Since the very first trials of Exjade, it has been apparent that patience is required, as ferritin levels drop very slowly in iron loaded patients. But this does not reflect the effects of the drug which is removing free iron from tissue and organs. The one place iron cannot harm a patient is when it is sequestered in ferritin, so the high level is not a concern as long as the scans show progress.
Andy

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