Exjade

Shikha,

Everything you said is so true. My only question is if patients, parents and friends know these things, why don't the doctors? Obviously any med should be started out with a lower dose yet we keep hearing about patients having serious abdominal reactions to L1 when first starting becuase the initial dosage is too high. Please doctors, stop rushing the patients. They have totally messed this up in maldives, thereby depriving their patients of a life-saving chelator....I am planning on raising a little hell when I get there.

Not the heat of Dubai that has got to me so much as reading post after post about how little the doctors seem to know or even care to know about thal. Is very frustrating. If I, who have no training can learn, they could also take some time off the golf course and also learn.

In case you meet anyone who can answer my question... if the stem cell of the baby of a Thal major  can help the mother ?

shikha mitra

I am wondering the same thing too and i agree with you. Hopefully there is a way that the stem cell could help a Thal mother.

Hello all,

Great news about exjade,hoping that it can reach all countries ,especially developing ones as Egypt
i am trying to find it hear ,hope i can find in shaa  Allah   


Best wishes for u all 

I don't know how much truth there is to it, but I have been told that within one year, exjade will be sold in India...possibily by another company as is the case with kelfer

Thanks Andy and Shikha for your replies regarding ExJade in India.

I also found out from some doctor's in India that Exjade is NOT available right now. Here is what he quote's -

"ExJade is currently marketed only in USA and Switzerland. Novartis informs me that marketing in India will start end 2006"

Just wanted to update the post so other readers can get information about this too.

-Narendra

Hello to all

I read and hear that "oh when is Exjade coming" "I can't wait for Exjade to arrive" I'm on Exjade thank god" "In my country Exjade isn't being trialed" and "In my country Exjade is approved" but we must thank our stars for the fact we are still here living and living a healthier lifestyle because if it wasn't for Desferal we wouldnt be here at all.

Never forget that Desferal is the "gold standard" of chelation therapy even though we all hate injecting ourselfs and in some contries to date Desferal is still  non obtainable, that's the wonder drug that kept, keeps and will keep most of us going.

Miaki

Well put Miaki.

What is Exjade, how successful it will be in long term, what are its side effects. I will leave future to answer that. Atleast I know "Desferal" and its experiences. I hope Exjade will work wonders for all Thals.

Thanks

All I know is that most people (including me) find it better to swallow pills than poking needles. It's really hard for us and especially small children to go on with this every night. Furthermore the availability and price fluctuations during shortages in developing countries makes it more unpleasent.

So it's not wrong to wish for something convinient. However, we might experience the availability and price issues with Exjade too.

And about that Desferal comming early than Exjade; well that's our tough luck! I mean, if Exjade had came before Desferal then I can assure you that no one would have liked to switch to Desferal like they are willing to, for Exjade.

Just my minor thought. Keep cool 

When I was younger all I heard was that a tablet would be out in 10 yrs time. A short time later my mother was popping me with pills & then the pills went away. But I knew nothing and kept counting those days, weeks, months and years for this new wonder tablet to appear  - that was 27 years ago & I am still waiting just like everybody else.

I have traveled & seen how many patients around the globe can't afford to get Desferal or that Desferal is not available in their country. (That in it’s self is a crime) I have a few times sent packages to various countries that would deliver pumps, desferal, syringes, tapes & whatever other medical needs are needed.

I feel for the younger generation of thal patients coming thru now days. When I go to clinic for my own transfusion & hear the poor child in the treatment room crying, I close my eyes & try to block out the memories of my childhood. (Not that I had a bad childhood but the memories of nurses & doctors pinning me down to poke me with a needle to “make me better” mentally that didn’t make me better if anything it %$&^@#$ me up.  My generations of thals were guinea pigs. They didn’t know what was expected of thals & how we would survive & if (like we have) they think we are miracles. When doctors hear I’m a thal patient they say “and your still alive?” I look at them sometimes & respond “ Hell yes – why don’t I have a right to LIVE?”

As we know L1 is an oral iron chelator but again works better in partnership of Desferal. As much as we don’t want to think about it Desferal will always be around. But what makes me think is what a lovely coincidence that when the patent for desferal ran out exjade was suddenly appeared!!

My minor thought’s on such a major topic……
 :smile

Miaki

I totally agree with you.Hats of to you guys.
When ever we take our small daughter of transfution not only her but we also have a terrible time when she is candalised. Sometimes or rather most of the time its very diffcult for the nurses to find her vain, so she has to be pricked twice or thrice. Hats off to the nurses also, they are very patient and nice.

Talking of not getting vain while pricking, Can any one suggest a better way to find the vain so that just the one prick can be the correct vain.We heard from some one that if the child gets a nice hot water bath the vains are visible and its easy to prick ( Which we do always before going to the hospital). Also we apply Emla cream on the hand , so that while pricking it does not pain the young one.

Miaki, I am very happy to read that you have almost in the 3rd decade.It gives me immence confidence and happiness that our daughter will also have a very long and beautiful life. After all, God is always Kind.

Bye & Good Luck

Alpa

My daughter had a same problem (vain detection) two years ago. To overcome the problem; hospital used to call a specialist in infant. Sometimes we were lucky or otherwise. I think over the period of time this problem will resolve itself as the child grows.

Good Luck.

Hi Alpha

There is a swab that enhances the veins. You simply wipe the area and under a light your able to detect the veins. (I have a packet at home which I picked up in Italy Polermo afew years ago at a TIF conference. I will post with more details when I find it) If anybody knows what I'm on about please post.

Also you can try using a wheat pack. Heat the wheat pack in a microwave once your at the hospital and place on the area your going to use.

I wanted to mention something that I should of memtioned from my last response. That we should never loose sight of the wonderful work our nurses and doctors do. Its must be hard on them as it is on us. 

Regards
Miaki

What is the cost of Exjade per gram in USA? Does any one know this? Who are the suppliers of Exjade? Is it directly from Norvartis or are there distributors? Norvartis seems to be very tight liped to talk about price as they want 200 million dollor per anum, may be their target. This is what I find from google search only.

Hello Mustho  (and everybody else)

Please click on the following link that I came across regarding dose, cost, and anything else you want to know regarding Exjade - ICL670 - Deferasirox (which ever one it likes to go by)

Hopefully some of this info might help clear the air with dosing, costing and trial outcomes.

Regards
Miaki

http://www.ptcommunity.com/QUIKReports/content/Deferasirox.pdf

hi everybody! im new to this site. i would like to say that i am a proud user of the Exjade. i've been on Exjade for about 2 months now, and havent experienced any serious side effects. only stomuch akes once and a while. im taking 1000 mg every morning with water. althought i prefer orange juice; it's just that it doesnt dissolves as quick as water.