how much exjade for long term users

Hi,
My son is 7.5 years old now and has been taking exjade since he was two. It's working well for him but he is on pretty much the same dose of 375 as when started though his weight has increased alot. Often if his ferritin  has been lower he has taken 250 and 125, twice stopping altogether when ferritin  went below  300. Nowadays it's higher in the 900's but going down  so doctor doesn't  want to change it. Is this typical. I was under the impression  exjade dose should increase as weight increases.
Zahra

It is typical. My daughter had similar regime of 375mg until she was 10. As long as dosage is working, no need to adjust it.

I think most people will tell you that if you always keep your ferritin low, it is always much easier to control. By properly chelating, enough chelation is taken so that an iron load does not build, so the chelator only has to deal with iron recently released from the breakdown of red blood cells. The advantages to always staying on top of chelation are huge.

I agree Andy.  The longer iron rests in organs the more damage it does.  The key is to not allow it to build up.  Ideally, and the end goal is for patients to be on low dose or chelator that maintains low iron levels. 

Hi Andy,
My son has used Exjade for a long time, but it is too expensive for us. So what iron chelator has cheaper price but also has highly effective ?
Many thanks for your advise.

Than your only alternative is Ferriprox. It's actually as  effective as Exjade...

Where are you from?

Than your only alternative is Ferriprox. It's actually as  effective as Exjade...

Nope, it is not as effective as Exjade.

You can't say that in general. If someone tend to gain more iron in the heart Ferriprox works better! Besides I got people here, including myself, who had allways better results with it and for whom Exjade just didn't work that well. It depends from case to case so if you want to put one on top do it... I wouldn't.

Hi all,
I'm from Vietnam. Exjade  is too expensive for me. I am very worried about this

It can be said in general only and not in specific.

Only when one have more iron in heart Ferriprox/Kelfer is useful in an excellent way. Rest all things are negatives for it.

Not only Exjade but any chelator including DFP have side effects and it do not work for all.

It is the fact that any chelator effectiveness depends on case to case basis but in general Exjade/DFX works for 90%.

Personally i have seen that in so many cases it also removes cardiac iron in addition to Hepatic iron.

In my case it works like miracle and removed the hepatic iron but neither DFX nor DFP, even DFO din't remove Cardiac iron.

So, to sum up,
It depends on Case to case basis, but in general DFX is preferred and first line of treatment.

Hi all,
I'm from Vietnam. Exjade  is too expensive for me. I am very worried about this

I have inquired for the same but asked to Cipla (Desirox 500) , will let u know if they revert.

htuongvy,

Are there any other forms of Exjade (Asunra, desirox or similar) available to you? Or Kelfer?

Cipla Cust Care replied that Desirox 500 is not available in Vietnam.
Another option for us is to inquire about defrijet.
or
If any of them is available online for selling it can be ordered Online

It can be said in general only and not in specific.

Only when one have more iron in heart Ferriprox/Kelfer is useful in an excellent way. Rest all things are negatives for it.

Not only Exjade but any chelator including DFP have side effects and it do not work for all.

It is the fact that any chelator effectiveness depends on case to case basis but in general Exjade/DFX works for 90%.

Personally i have seen that in so many cases it also removes cardiac iron in addition to Hepatic iron.

In my case it works like miracle and removed the hepatic iron but neither DFX nor DFP, even DFO din't remove Cardiac iron.

So, to sum up,
It depends on Case to case basis, but in general DFX is preferred and first line of treatment.

Hi HANUMANTAASHRIT,
What do you mean DFP, DFX ?Would you pls explain for me?  Iam not good at English, but i try my best for my son