Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Alia on March 03, 2011, 11:43:47 AM
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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
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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
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Rehman,
How long have you been using Ferriprox? I am wondering if it can help you gain weight like it does for Panos.
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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
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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
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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
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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
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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.
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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
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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 .
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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
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isn't it great how more and more of us have ferritins in normal ranges!
best of luck to everyone!!!!!!
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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
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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
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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.
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@ Aliya ,
ur welcoem .... yeah that's a good sign that combinationis working fine .. . i would like to advice you to be punctual with her medicine ,, try your levels best to not to miss any dose ,,, ....
yeah , i always take my medicine at time, ,, i have a plan of taking Ferriprox and i always followed that plan since I'm taking Ferriprox,, its 7-3-11 ,, 7AM for 1st dose ,, 3PM for 2nd Dose ,,, and then 10/11 PM for 3rd dose ... the main thing behind this plan is 8 hours gap between 2 doses ,, bcoze as Narendra mention the medicines like Ferriprox ( medicine which doctors prescribe us thrice a day ) remain active in our body for 8 hours ,,,, so thats the reason Why they prescribe us to take them thrice a day to keep the action of active for whole 24 hours ... at the time i was xtremely concerned aboout my Ferritin level i always Tried my best to take Ferriprox after every 6-8 hours in a day ,, ... you may make your very own schedule for that purpose , schedule that suits you .... now a days my timings for taking Ferriprox is 9AM 1st dose ,,, then 4PM 2nd dose ,,,, and then 11PM 3rd dose... ..
i hope i answered the question ,, if i missed anything ,, ,then feel freee to ask about that .. :)
Best Regards
take Care
umair
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Hi Friends,
Do we get Ferriprox in India? If so where can i look for it.My daughter's Haemotologist has not suggested till date on using Ferriprox(Its Kelfer ,right?) .My daughter is on Asunra 400mg per day(her weight is 13.5 kg and she is 4 1/2 years old) .Her doctor last time suggested that if Asunra seems to be working only with side effects (SGPT,Serum Creatinine) ,she will suggest to use Pump for chelation.How far is the usage of Pump effective?Please advice me on this.
Thank u all one again.
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samyuktha - Yes Ferriprox is available in India under the name Kelfer (also known as L1). Try to get in touch with local thal society and they should be able to help you.
The pump (meaning desferal) has been the treatment for so long (issue is the needle and the pain) and lots of doctors have mentioned Desferal along with Ferriprox - is the best option to remove iron from the body.
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hi!
alia .. i m also using ferriprox and it is very good and effective and specially in my case.... when my fe level was too high 11000 i used combine chelation therapy ferriprox+ desferal and it worked and now my fe is in normal range and i am taking ferriprox only.
i hope it will better work for your daughter.
but in start you should use combine therapy...:)
thanks
laiba mukhtar
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I would like here to repeat that combination therapy must be followed even if ferritin is low as it is long established now that ferriprox is for the heart and desferal for the liver and this does not change in any ferritin level.
Lena