ferritin around 3000

Hello everyone, i m new to this site. i m mother of 5 year old thal major girl - from India. my angel's ferritin is around 3000 which i think is very high. actually her doses are missed every now n then due to some or the other reason. I want to start afresh. pls guide me. morning dose is not possible as its early morning school. right now her dose is 400 mg per day.

apart from it she takes b-folcin 2.5 ml twice. pls guide what more can i do for my angel.
thanks all.

Hi ANgel's mom,
3000 Ferritin is high but it is possible to get it down with diligence.  for that you have to be very regimented and strict. The chelation should only be skipped when there is fever. There should be no excuses to skip the medicine for any other reason. You mentioned the dose as 400mg/day. is it exjade? what is her weight? with exjade, now there is no food restriction. so it should be possible to give her the medicine anytime of the day with food. In fact it is better to take the medicine with food.

In my opinion, right now, focus should be to get back on track on chelation with the right dose. there should be no missed days. if there are side effects, please tell us and we can suggest if that can be controlled. Once she is regular with chelation medicine, then you can introduce multivitamins with trace minerals and vit D. But that can probably wait till the chelation routine is in control.

Thanks dear for the revert. Her weight is 16 kg and her dose is 400 mg /day - asunra. I was under opinion that it has  to be given only on empty stomach hence doses were missed. but i read a lot in this site that its not true. from today only will give her regularly.

Thanks...will take advise from this site on every matter related to thal.

Thanks once again.

Hi
The current dose can be increasd to 640 mg per day... depends on the response of dose increase on ferritin.
Initially u can increase 100mg tab to ur current dose then check the ferriitin regularly.
The Asunra aka Exjade can be given in split dose which gives true 24 hours chelation
It can be also mixed with foods(avoid high fatty foods only with Asunra)
There should not be any reason to skip it.
U can share the reason for skipping so that we can find out the solution.

I am also from India.
Who is ur doc?

what Dharmesh suggested is 40mg/Kg weight/day....I do not know if that high dose can be used on a 5 yr old child. But if your daughter is tolerating exjade well, you can safely increase the dose to 30mg/Kg weight, which is around 480mg/day. But please be regular and consistent. Do not let miss any dose and you will see the ferritin coming down. Lower ferritin will ensure your child grow up normally and if you can maintain her Hgb betwen 9.5 and 10.5, she can do any and all activity she wants to just like any other child. Best of luck! 

It would be best to get the dose up higher. The current dose is insufficient. If you can get the 125 mg tabs, a dose of 525 mg daily would be appropriate. Do not skip doses. There are many ways to take the med to make it easier. It is far more important to take the drug that how it is take it. Various methods have proved this out. With food or without food, the results are the same, but many find it easier to take mixed with foods, rather than liquids. Splitting the dose into two and taking twice daily has also helped many patients be more compliant and also tends to give better results.

what Dharmesh suggested is 40mg/Kg weight/day....I do not know if that high dose can be used on a 5 yr old child. But if your daughter is tolerating exjade well, you can safely increase the dose to 30mg/Kg weight, which is around 480mg/day. But please be regular and consistent. Do not let miss any dose and you will see the ferritin coming down. Lower ferritin will ensure your child grow up normally and if you can maintain her Hgb betwen 9.5 and 10.5, she can do any and all activity she wants to just like any other child. Best of luck! 

What i have suggested is initially increase in dose by 100mg only. depend on 3 monthly ferritin report if fe is increasing gradually the dose can be taken to 40mg/kg in increase of 5 to 10mg/kg.

It would be best to get the dose up higher. The current dose is insufficient. If you can get the 125 mg tabs, a dose of 525 mg daily would be appropriate. Do not skip doses. There are many ways to take the med to make it easier. It is far more important to take the drug that how it is take it. Various methods have proved this out. With food or without food, the results are the same, but many find it easier to take mixed with foods, rather than liquids. Splitting the dose into two and taking twice daily has also helped many patients be more compliant and also tends to give better results.

Asunra comes in packing of 100mg and 400mg tabs

Hi

My Son is 8 yrs old, E-beta Thal.
Last year onward we put him on a regular transfusion(1 Unit) at an interval of 4-5 weeks. His wt is 22kg
After 10 Tx, his ferritin is 561, so I hope we can wait until it reaches to 1000.
What is cost of Asurna in India and at wat dose should we start initially.

Thanks & Regards
Dip

Thanks Dharmesh. Novartis does make an Exjade tab that is 125 mg, but I didn't have the details for Asunra.

This is another marketing gimmicks andy after what they do with once daily dosage.
I can't understand why they need another brand name like Asunra in India and another region and Exjade in UK USA etc. region.
In Additon they didnt kept the preparation in 500 and 250 mg in India in Asunra Brand...
I think it is profit making policies.
While other generics like desirox and defrijet comes in 250/500 mg preparation

Hi

My Son is 8 yrs old, E-beta Thal.
Last year onward we put him on a regular transfusion(1 Unit) at an interval of 4-5 weeks. His wt is 22kg
After 10 Tx, his ferritin is 561, so I hope we can wait until it reaches to 1000.
What is cost of Asurna in India and at wat dose should we start initially.

Thanks & Regards
Dip

Cost of Asunra is Rs2000 packing of 30tabs of 400mg from NTWS Delhi.
Initially it should be started @ 20mg/kg with doctor's observation and monitoring