Exjade finally in Pakistan.

Abbott Pharmaceutical and Hospira Inc are two US companies that manufacture generic desferal (deferoxamine ). Google either name to locate their websites.

defiantly a good news i have been waiting a looong time for this and finally its time lets hope we do get it this time. and its not very expensive so everybody can afford it unlike thalaset and i hope novartis does not stop producing desfrol. @zaini i have been taking wheat grass juice and i found the results good

Hi,

We went for Zainab's transfusion today,Novarti's officials were there to give a presentation about Asunra or exjade.The things they told, most of them i knew about, the courtesy of this wonderful forum,although the doctor giving the presentation was talking very lightly about kidney and liver problems,anyways main issue back there was price,and according to them price for asunra would be 10 dollars per 1000 gram,and calculating the dose as 20 mg per kg,Zainab's dose would be 500 mg, meaning 5 dollars per day,a bit reasonable,and they said that they have delayed the launch till may-june so that they can force their head quarters to lower down the prices more if possible.

Another interesting thing,as the launch of asunra is coming ahead,Ferriprox people have lower down there prices by 50%,i couldn't believe it when i heard it first time,medicine we were getting for 7000 RS is now available for 3400 RS.What should i call it?

Anyways, the thing what do you people recommend? Zainab is doing fine with combination therapy,Should i switch to Asunra?Is it surely more effective then the combination therapy? and if it doesn't suit Zainab,will we be able to start back with combination therapy? I am confused,Zainab's ferritin checked in feb was 1549,what should i do?

ZAINI.

One more thing,Asunra is being launched in Pakistan and India simultaneously,So good news for indian fellas too .

ZAINI.

Zaini,

There is no chelation method that is superior to the combination of desferal and L1. L1 does what desferal does a poor job of in the heart and desferal does what L1 does a poor job of in the liver. By working together, they compensate for the weakness of the other drug, and create the best chelation method currently known. Exjade has proven only to be as good as desferal by itself. Since Zainab's ferritin level has been improving, I would suggest making no change at this time. Once her ferritin is below 1000, you should think about the switch to exjade. The oral drugs are much more likely to be complied with as she gets older, but right now you should continue to work on lowering her ferritin level, which is already very good, but would be better under 1000. As time goes by we will have more information about exjade, but it has already been shown that to lower high ferritin levels, exjade must be taken in doses of 30-40 mg per kg body weight, and most patients are not on this dosage.

I am hoping that at the upcoming Singapore conference, we will learn more about the effectiveness of exjade and possibly some preliminary information on whether it is safe to combine exjade and L1.

Hi Andy,

Thanx a lot for your reply,i was thinking along the same lines,i told novartis officials also that combination therapy is the best,but he was all about pain of needles, but if it is working removing iron from  my daughter's body a few pokes aren't bad,although i don't know why Zainab's ferritin is not going below 1000,we are very compliant,seven days a week L1 and thrice a week desferal,sometimes i do it 4 times a week,but most of the time zainab starts complaining and my husband tells me that three times a week is enough,i am trying as hard as i can.
In the coming months we'll do zainab's echo ,eye check up and some other tests which are advised to be done on annual basis,i hope all will be well.

ZAINI.

Zaini,
What I noticed with my levels is that they did not move as quickly in the beginning but once they did they kept going!
I dont know that you would have done the t2* on Zainab but mine showed vast improvement although my ferritin is stillover 1000 (1300). So dont worry too much about it. I am on combination therapy myself and now that i am actually here in Canada, I am being offered exjade as an alternative. Its an option I personally dont want as I prefer to stay on what is working rather than to switch to something that I am not sure might be for me. What i do know is once my levels drop I will only have to be on ferriprox....so its something to look forward to!

So dont stress yourself out too much okay.

Hi B Thal Gal,

Thanx for your kind words,Zainab's ferritin is lowering gradually,once it even reached 2400,then it came back to 1800 and now it's 1549,i hope i'll see a change in her next ferritin test.I have also started wheat grass super shots,i know they take a long time making any difference in hb levels, but i am really looking forward to it,less transfusions ,less iron,but let me tell you it has made a great difference on her energy levels,she is usually an active child,but now a days she is running and jumping all the time  Thanx to Andy.

ZAINI.

I'm really happy to hear of Zainab's continuing improvement and would strongly recommend wheatgrass and IP6 to all patients. Even when wheatgrass makes no noticeable change in Hb level, patients still report increased energy levels, stronger immune systems and overall better health. Also, the more I read about thalassemia, the more I realize how important antioxidants like IP6 and Vitamin E are to the patients. Almost all thal majors test for severe deficiency of Vitamin E.

Thanx to Allah Almighty,

And thank you too Andy,just because of your recommendations,i've started seeing some pinkness in her cheeks and she has a much fairer complexion now  .

ZAINI.

Hi,

If anyone wants to but Asunra in Pakistan,or want to inquire about it,here are the numbers and the address.

Dr Naz Tanveer Khan
Zonal Sales Manager(south)

Novartis Pharma(Pakistan) Ltd.
15 West Wharf Road,Karachi 74000 Pakistan.

Tel: 92-21-2203115

Fax: 92-21-2203908,2310241

Cell: 92-300-2556809

E-mail: naz_tanveer.khan@novartis.com

ZAINI.

@zaini is L1 still available in Pakistan? thallesemia center stopped them when ferriprox came and now i even don't get ferriprox i get ferrinil which does a very good job of getting my platelets and white cells down

@andy please tell me a good thal center in london uk for getting blood transfusion

L1, deferirprone, kelfer, ferriprox, and ferrinil  are all the same drug.

One of the best thal centers around is in London.


Thalassaemia Care Centre in London

Dr. Farrah Shah, Specialist (Thalassemia Physician)
Emma Prescott, Specialist (Thalassemia Nurse)

The Thalassemia Clinic, Mercers Ward
Whittington Hospital NHS Trust
Highgate Hill, London, N19 5NF

Phone Number
02072723070

Asim,

Ferriprox is definitely available in Pakistan,and they have also reduced the prices,but ferrinill is as same as ferriprox so don't worry.

ZAINI.

@zaini yes yesterday i went for my blood transfusion they gave me info on ferriprox dealer in isb and now ferriprox is availiblle here too... but according to my experience they are not the same because when i was using feriprox i was fine but when i used ferrinil my platelets and white blood cells were dropping to dangerous levels so i stopped ferrinil immediately...

@andy thanks but this number is for the hospital could you please tell me the email or telephone number of dr farah shah because i called at that number and i keep on getting transfered to other departments so no luck and is there any place for blood transfusion in oxford too?