Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: zahra on December 16, 2015, 08:19:31 PM
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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
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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.
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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.
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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.
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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.
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Than your only alternative is Ferriprox. It's actually as effective as Exjade...
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Where are you from?
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Than your only alternative is Ferriprox. It's actually as effective as Exjade...
Nope, it is not as effective as Exjade.
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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.
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Hi all,
I'm from Vietnam. Exjade is too expensive for me. I am very worried about this :(
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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.
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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.
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htuongvy,
Are there any other forms of Exjade (Asunra, desirox or similar) available to you? Or Kelfer?
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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
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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 :(
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htuongvy,
Are there any other forms of Exjade (Asunra, desirox or similar) available to you? Or Kelfer?
There is only Kelfer and Exjade, but now Kelfer is not available.
If i want to buy online, what website is reliable?
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My son has just tested the ferritin this morning. It is now 370. So i stop Exjade or still use the maintaince dosage?
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You can also lower the dosage for a while. In arrangement with your doctor about the exactly amount of course.
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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 :(
DFP = DEFERIPRONE = KELFER = FERRIPROX = L1
DFX = DEFERASIROX = ASUNRA = EXJADE
the short forms helps while writing a post. sorry it caused trouble to u
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There is only Kelfer and Exjade, but now Kelfer is not available.
If i want to buy online, what website is reliable?
Means till date Kelfer was available in Vietnam?
Why they stopped supplying Kelfer there?
Do you have any information about it?
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DFP = DEFERIPRONE = KELFER = FERRIPROX = L1
DFX = DEFERASIROX = ASUNRA = EXJADE
the short forms helps while writing a post. sorry it caused trouble to u
. I understand. Thanks so much. I use tranlate.google, so that my english is not fluently. I hope you understand.
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Means till date Kelfer was available in Vietnam?
Why they stopped supplying Kelfer there?
Do you have any information about it?
I can't buy directly from Kelfer. I buy from a mediate pharmacy. They import kelfer for a long time. But now they stop. I don't know the reason.
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I have just ctc with another pharmacy, they have EFFEREX ( DEFERIPRONE ). Is it ok ? It is useful for chelating iron in heart. Is that right ? So that my son need MRI test in order to know where iron overload ? with his ferritin abou 1100 ( now decrease 370 ) i don't need to worry so much, do i ? I can't sleep every night when i think about him
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Deferiprone is the same drug as Kelfer and Ferriprox. This is a good solution.
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Deferiprone is the same drug as Kelfer and Ferriprox. This is a good solution.
Tks Andy. Tks all