Generic Exjade (Asunra) for developing countries

§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Generic Exjade (Asunra) for developing countries

« on: January 30, 2008, 08:56:11 AM »

Hi Everyone,

I was with the J.S.F Project Manager yesterday who told me about the upcoming generic Exjade for developing countries.

He said that they are ready to place a large stock order BUT the management have concerns making a big investment due to unreliability of (get ready for a shocker) "The original Exjade" so will it be worth it to invest in a cheaper (about 10 times) version that no one has tried yet!!

I denied their concerns and told him about it's success in the Exjade users on our site. He then showed me the regularly monitored blood tests including S.F results of the two patients who were on the "Original Exjade" bought from either Europe or U.S; which showed that one of them had a slight increase in S.F while the other's S.F hovered during the span of 10-12 months.

Now these patients are very well maintained and were very compliant with Desferal. But ever since they switched to Exjade, they are not very satisfied with it (After all it costs them a fortune) and it barely maintains the S.F levels with an increase trend after 10-12 months.

He offered me to try (I wonder what they are thinking

) Asurna and see if it does any better than the real thing before placing a large order and I said, "Hmmm...now that you put it in that way, I'll think about it."

I want you guys, my extended family to tell me what to do before signing up. However, life without the daily needles looks soooo worth it even with the 10X cheaper cost, but I need it to get my 9000 S.F down and not hover with a slight increase at the end of an year.

Let's see what happens. I sure hope they get it and it works too... $:-\$

« Last Edit: March 03, 2008, 02:41:37 PM by §ãJ¡Ð ساجد »

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اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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amrit_sembhi

9

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #1 on: January 30, 2008, 11:15:04 AM »

Hi All,

In fact I wanted to post this question of Exjade launch in India. Being new on the site to day could not figure out how to post a querry.

While, my daughter milan had BT on this Monday at Chandigarh(North India), I got the good news that Exjade is being scheduled to be launched In Mumbai (India) this March 2008 by Dr M.B.Aggarwal at Bombay Hospital. It will be in the doses of 100 and 400. Details are awaited, shall appreciate if some more light is put on this from folks from Mumbai on enquiry with Dr. MBA.

Best regards.

Amrit Sembhi

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Manal

3100
Gender:
mother of thal intermedia child

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #2 on: January 30, 2008, 11:50:21 AM »

Hi Amrit Sembhi and welcome to the site, i am sure you will gain alot if information here.

Sajid, i think you should work on lowering your ferritin first before trying anything new. I know that this will involes all the needles hassels,but please be in safe side first. Second option, you can combine the new brand with desferal instead of L1 as i know it isn't suitable for you right now.
Anyway, please do not stop the desferal for anything until we are in the safe side. Good luck, you can do it and keep it ''down''

Manal

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Canadian_Family

1064

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #3 on: January 30, 2008, 02:47:41 PM »

Sajid,

This looks like a business decision by Novartis (if the news is true). Given the current cost of "Original" exjade it is possible that Novartis is planning a generic version because obviously not many people can afford it and they have to make money out of their investment.

How effective is this generic version?
Is it really been approved for trials?
What study is done prior to launch?

Sajid, don't go blindly on that, contact Novartis directly and whoever you deem see fit to contact. It is quiet possible Novartis is trying to get some people to try it for them before full launch, but they have to follow all the protocols of a trial. Obviously the easy target is the developing nations where rules are not strict and easier to find people who don't ask too many questions.

Your SF is really high and only you can decide if you want to try the new drug. Frankly, I wouldn't under the circumstances. I would first get my SF down to a level where it is safe to try anything new (just to play safe and after striking out the "what if" scenarios).

Let us know your decision and we will be with you always.

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Regards.

Hope

73

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #4 on: January 30, 2008, 04:23:59 PM »

Sajid,

I have heard from many Thal pateients that with Exjade, the ferritin first go up before it comes down. You already have very high Ferritin so, I will suggest use the standard protocol for lowering high ferritin - which is 24 hours desfereal for many days (as instructed by your doctor) plus L1. I hope you can use L1 pretty soon because at that high Ferritin, there is a real danger to your heart and L1 can effectively remove iron from the heart. Please work diligently to reduce your iron levels. I worry for your health.

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priya

121

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #5 on: January 30, 2008, 07:00:06 PM »

Hi Sajid

I think as other members said you should be concentrating in lowering you ferritin count as you number are quite high you should not take any risk in trying some thing new. We all know that Exjade is helpful in some cases but "How Generic Exjade effect on SF" we don’t know.

Take Care & Best Wishes.

Dimple

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§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #6 on: January 31, 2008, 07:49:00 AM »

Hi everyone!
Thanks a lot for your valuable opinions. It really has made me feel special

I will get more info about it from them in a few days and share it with you.

Meanwhile can the current Exjade users tell me how Exjade is doing with them and what dose in mg/kg they are taking which had made their S.F gone down?

I think the patients I mentioned are taking it too low; they are at the initial 20mg/kg dose.

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اَسّلامُ علیکم Peace be Upon you
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Web Site

Kathy11

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #7 on: January 31, 2008, 12:06:17 PM »

Hi Sajid
My, My, I must say this is a nice chocolate cake!!!!!!!!!! you are the best pastry cook.
I'm droolling

.
I can eat all my virtual cakes no calories

nice one ,
Kathy

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§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #8 on: January 31, 2008, 01:32:25 PM »

Thanks Kathy!

I wish I could just reach out and grab them like in the movie "Charlie and the Chocolate Factory"

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اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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B Thal Girl

72

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #9 on: January 31, 2008, 03:25:08 PM »

Hi Sajid,
I must tell you that my SF readings were at normal ranges for Thals in my country (1700-1900) and I was totally shocked to get the results of my T2* reading when I finally got it checked (wasn't available in my country).

I had to move countries but I was put on the combination therapy (L1 and desferal) which has worked towards getting my levels down both in my liver and heart (both were overloaded).

I must say that I am grateful for this and I will NOT think of changing this program for anything especially since there is no solid proof that ay other chelator can touch the iron in the heart.

I know that you will do what is best for you but make sure and do proper research as we need you around as well.

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§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #10 on: February 02, 2008, 01:23:07 PM »

Hi,

Thanks for your advice. Today I went to meet our project manager about the dose of Exjade for the above mentioned patients but he was too busy. I waited till my blood was ready for my transfusion. Oh well

Maybe some other day. I'm not keen on starting Asurna myself too after reading all the messages above

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اَسّلامُ علیکم Peace be Upon you
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Web Site

Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #11 on: February 02, 2008, 08:46:40 PM »

Sajid,

When a patient switches to exjade the starting dose is not normally the maximum dose. It take some time to adjust to the new drug before the dose can be raised high enough to make an impact on lowering ferritin. It has been shown that the dosage of exjade needed to lower ferritin is 30-40 mg per kg of body weight. The starting dose is usually no more than 20 mg/kg. If your ferritin is already high you can expect it to jump initially when starting exjade. Because of this, it is preferable to get your ferritin lower with aggressive desferal therapy before beginning on exjade. It is very important to be taking desferal for 6-7 nights per week right now. IV desferal during transfusions can also be considered as a supplement to your subq desferal. I would also suggest that if you can get your white cells high enough, to ask the doctor if you can start on a low daily dose of L1, so that you can be using combination therapy. As you get older, iron overload in the heart must be taken into account and dealt with. Even a low dose of L1 will have some positive effect on your heart. If at all possible, this should be considered.

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Andy

All we are saying is give thals a chance.

Canadian_Family

1064

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #12 on: February 02, 2008, 11:10:46 PM »

Andy,

Today we started the exjade for my dayghter, its 250mg in 1/3 glass of apple juice 7 days a week. Reading your post I quickly did the calculation and it looks like approx 20mg/kg. She is 15 kg and needs 300mg as starting dose but the tablets come in 250, 500 and 1000 mg dosage.

We are advised to give her prunes and high fibre food to regulate her bowl movement. We hope exjade will eliminate toxicity problems in her due to desferal. We have been advised to watch for rashes and stomach problems common for exjade starters.

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Regards.

Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #13 on: February 02, 2008, 11:22:56 PM »

I would suggest starting with the 250 mg tab daily and see how well she tolerates it. I don't know if you should add much more fiber at first as one complaint many thals had on starting exjade was that it made them very loose as far as bowel movements. This seemed to be a temporary condition for most who experienced it. This is a question where the experience of other users will be very helpful.

Should exjade users add more fiber to their diets?

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Andy

All we are saying is give thals a chance.

Hope

73

Re: Generic Exjade (Asurna or Azurna) for developing countries

« Reply #14 on: February 04, 2008, 08:28:47 PM »

Hi canadian family,

Good luck to your daughter...Hope she does well on this chelator. Since my daughter will start exjade pretty soon, please keep us posted how well your daughter is doing on exjade. Also, is she drinking the juice within 10 minutes? and please make sure to use only plastic spoon to stir the juice after adding exjade to it. I am really worried, if my daughter will refuse to drink the juice. anyway, i do not want to worry about it from now. i want to learn from parents like you to know what worked and what didnot.

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