Discussion Forums > Thalassemia Major

some ques about thalassemia major

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Nathan899:
Hi all, i'm Jonathan 21 yrs old from mauritius. I have the thalassemia as from 5 yrs old and i need to make transfusion every 3 months. I wanted to know what i can do to make my haemoglobin keep up and do transfusion more rarely as possible? Normally after a transfusion it's come above 8 to 9, and after 3 month it comes near 6. sencond ques is i just make a blood test and it says that my level of iron in me it's too high and my doctor just inform me that i need to take deferiprone to elimate it but the probis the in mauritius we don't have it. I just wanted to know where i can buy the deferiprone and how much it cost etc.. ??


Thanks for your help

Jonathan.

Andy Battaglia:
Hi Jonathan,

Welcome to the group.

Technically you are a thalassemia intermedia because you are able to keep your Hb above 6 by transfusing every few months. Majors have to transfuse more often and can't maintain an Hb above 6 without frequent transfusions. This means your iron accumualtion isn't as fast as it is for majors, but now it is getting high enough to need to chelate. Did your doctor tell you what your ferritin level is?

Iron chelating drugs such as deferiprone are only available by prescription so they are hard to get from another country. Your doctor should contact Apotex or Cipla to see if deferiprone can be imported into Mauritius. Contact information is below. There are two other chelating drugs, desferal and Exjade. Desferal is taken using a needle inserted under the skin for about 12 hours at a time. Exjade is a new oral drug that is quite expensive. It is important to lower your iron as it will damage your organs over time.

Does anyone in Pakistan know if any of the local suppliers of deferiprone export the drug to other countries?


Apotex Zimbabwe Office

Distribution Office:

Zimbabwe

Silchem Trading (Pvt) Ltd.
10 Kenmark Crescent, Bluff Hill Industrial Park, Bluff Hill, PO Box WGT 1273, Westgate, Harare, Zimbabwe

Phone:  263-4-331126 or 263-4-331446
Fax: 263-4-305926 or 263-4-331168




Cipla Ltd.
Mumbai Central
Mumbai 400 008
India
     
Telephone:
   
2308 2891
2309 5521
     
Fax:
   
91 22 2307 0013
91 22 2307 0393

§ãJ¡Ð ساجد:
Hi Andy,

Global Pharmaceuticals manufacture it by the brand of "Ferrinill"

Appearantly they are giving it to their own patients of Jamila Sultana Foundation; but there has been a lot of demand for it by the patients of other cities of Pakistan. I don't know if Global has fulfilled their demand or not but when I asked them for Zaini they told me that they are supplying it to Kashif Iqbal Center in Karachi from where she can get it.

I will ask them about their export policy when I go there in a couple of days and you can also send a letter of request to them at the Jamila Sultana address:

Global Pharmaceuticals.
c/o Jamila Sultana Foundation.
D-24, 6th road, Satellite Town.
Rawalpindi.
Pakistan

Zaini:
In Pakistan ferriprox(defriprone) is supplied by ICI life sciences,

http://www.icipakistan.com/lifesciences.html

You can contact their marketing manager,pharmaceuticals at saboor_ahmed@ici.com.

ZAINI.

Nathan899:
Hi Andy, I'm sorry yesterday i didn't say all the details. When i was young i made transfusion every month and after removing the Pancreas i made the transfusion more rarely i.e every 3-4 month and after 3 month sometimes my HB goes under 6 and then i need to do transfusion. Normally every transfusion now i received 3 pint of blood " Packed cell " . And my doc say that i have the thalasemia major. That's why i wanted to know if it's true or not i have the thalassemia major or not ?? Normally i took 1 Folic acid 5mg every day. and i wanted to know if there is any other things i can do to do the transfusion more rarely or make my HB to stay stable?  I wanted to know also normally for every pint of blood, how many hours need to do one transfusion of 1 pint?? Because in the hospital i went to do the transfusion some nurse say 6hrs for 1 pint, some say 3 hrs. I myself i don't don't know who i need to believe:(


Thanks a lot for your help,

Jonathan.

P.S Any comments or suggestions are the most welcome.

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