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Question for Andy...

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Emby:
hiya andy,

how are you? hope you are keeping well.
i would like to ask something.  my older son recently had his second t2 scan which revealed that the iron around the heart has gone from severe to moderate and the liver from moderate to totally clear of iron. he was on combi of desferal and ferriprox.  his ferritin is 147.  he has now been told to not have desferal but to increase ferriprox from 9 tablets to 12 to be taken every day.  he weighs 60kg.
what is your opinian?
looking forward to hearing from you.

emby   

Andy Battaglia:
Hi Emby,

It's a good improvement but there is still work to be done in the heart and Ferriprox is known for its ability to remove iron from the heart. Desferal is known for having a better ability for removing iron from the liver. Now that the liver iron is gone, the need for desferal is not currently there, as long as another chelator is being used. Even if it turns out that he does have to return to desferal later on, it is good to have a break, as all chelators have side effects and desferal's side effects are more of the long term use variety, so taking a break whenever possible is a good thing. The Ferriprox can work on the current problem and desferal isn't really needed, so I do agree to raising the Ferriprox dose and attacking the heart iron. I am sure he will also appreciate the break. Explain to him that it may or may not be a permanent break from the needle, so that if he does have to resume later on, he won't be so disappointed. As long as he doesn't have any problems using Ferriprox, it is preferred.

I have heard many doctors express a belief that no chelator should be depended on for an entire lifetime because of the long term effects, so switching to another chelator is something most patients should consider at some point during their lives. As more chelators are approved, this does become much easier. Since heart failure is the number one cause of death in thals, a chelator that works better in the heart is important and Ferrirpox does provide this. I am hoping we see similar results with long term Exjade use, but right now we can only be certain about Ferriprox.

I would also recommend that you make sure he is getting plenty of antioxidants in his diet and supplements.

Emby:
hi andy,

thank you for your reply.
he is not bad with needles as long as i make up the mixture. he is still my baby. 
yes it does make sense to use just the ferriprox just now also because his ferritin readings are within normal range and continuing with desferal could have toxic effects.
thank you again..i just needed reassurance.

emby 

Lena:
I only want to mention what I have experienced:
I stopped desferal for a year long and took only ferriprox. At the end of the year, heart (already clear) was even clearer and liver (clear too) was clear again but less clear than a year before when desferal was used(together with ferriprox, of course).

You can make your own conclusions...

Lena.

Andy Battaglia:
What Lena said is why I say to look at this as a break from desferal but not necessarily a permanent break. Depending on what happens with liver iron levels, desferal could become necessary again at some point in the future.

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