ferropox

Hi to all
After long thinking and discussition ,Saras doctors has stopped Exjade for her and she going start ferropox,(L1) her doctors says there hasn,t been many studies on children using ferropox. Can anyone  please tell me if there is any other adults/kids who is using this medicine and if so  is it working for them.
Please help as i really need to know thanks.
Alia

Dear Alia

i think that is Feriprox butt this medicine is very good from Exjade.

in iron chelation and in price because its cheep from exjade.

im aslo using feriprox first time im using ejade butt exjade is not working well.

thanks

Rehman,

How long have you been using Ferriprox? I am wondering if it can help you gain weight like it does for Panos.

Alia,

how old is your daughter? Ferriprox is a very good medicin, better than exjade. I have been using it since 2003. This is a good drug especially for the heart as it is cardio-protective. What is your daughter's ferritin though? Please give us some more info. In my Unit, there are kids using ferriprox. The only thing you should care about is to check with your WBC each time as it can cause neutropenia.

Lena

Thanks Lena,sara is 5 years old,her ferritin is 3100,Her recent MRI scan shows she doese not have iron in her heart but she got some in her liver.
Alia

Alia,

do you know the rates for heart and liver? her T2* I mean for heart and liver? because "some in the heart and some in the liver" that you say, is so vague.If you know rates, please tell us to get the right picture of Sara. Generally speaking, ferriprox goes for the heart while desferal and exjade go for liver. So if there is iron in her liver, desferal or exjade are needed. Of course, I am not sure if she can take desferal in her age. What does her doctor say about that?


Lena

hi lena
Sara got 4.2 rates in her liver, she does not show any iron in her heart. Her doctors are saying that ferropox works for liver is well. Are you sure it does not work for  her liver? They were going to start her with desferal but i told them to start with ferropox.
thanks

Hi Alia,

Ferriprox is an excellent chelator,but as Lena said it works better along with desferal,ferriprox protects the heart and desferal protects liver.

Zaini.

Alia,

Zaini is right - it is widely known that ferriprox is for the heart and desferal or exjade is for the liver.
In my opinion, Sara must take ferriprox along with desferal. If 4.2 is the T2* rate, it is too high and shows high iron concentration in the liver. Desferal is absolutely needed.

Lena

Dear Zaini and Lina
Before i was on ferriprox + Desferal combenation butt now my ferritin is come down to 250.

my Doctor advise about Ferriprox  rgualar  and desferal only with blood transfution.

my weight is 56 kg .

cane you tell me its good or bad .

Rehman,

my ferritin is 114 and I take ferriprox regularly and desferal twice a week with 5 vials in 30 ml of water.
With this scheme I succeed in keeping my ferritin around 100.

Lena

isn't it great how more and more of us have ferritins in normal ranges!
best of luck to everyone!!!!!!

Aliya ,
me too using Ferriprox since last 3-4 years .. it work;s really welll. . i was on combination therapy of Ferrriprox/kelfer and Desferal ... when i started this therapy my Ferritin  was around 13000 but now alhumdu-LILLAH its within 500ng ..... so it worked quit well for me . i hope that it will work well for ur daughter too ,,,, Wish u n ur daughter all the best of luck .

Best Regards
Take Care
umair

Thanks Umair
Sara is now taking ferroprox 3 times a day, her ferriten is going down which is really good. As she goes to school i always forget to give her her afternoon dosage. over all she is doing well, iam keeping close eyes on her white blood cells. Umair do you have to take your ferroprox tab each day the same time?
how r u doing with medicine?
alia

Alia,

Yes - Ferriprox should be taken at a regular interval. The reason is Ferriprox works for 8 hours once it is taken. After 8 hours - another does needs to be taken, so the iron is chelated continuously.

Also for reference, there are hundreds of children in India who took Ferriprox so don't worry about your doctor telling you studies have not been done in children taking ferriprox.