Exjade

Hi Danielle

But you are also taking Desferal along with Exjade. What is the dose of Exjade that you are taking? It has to be per body weight right?

shikha Mitra

I'm on very little Desferal.  Desferal itself, even at high doses, never reduced my ferritin that much in such little time.  I'm only on 2 grams of Desferal, subq, once or twice a week.  The amount of Exjade I am taking is 1750mg.  Yes, it goes by body weight.  Exjade dose should not exceed 30mg/kg body weight.

Hey Danielle,

Did the Exjade rash clear up and have their been any other side effects?

Yup, rash is completely gone.     You were right, Andy.  It went away between 7-10 days.   

No other side effects ... yet.   

That's a great news. Good going Danielle. Exjade is the thing for you now! 

That's great news Danielle. I am so glad that rash cleared. You had it worse than most people but even then it cleared up quickly.

We'd like to hear from every single person on Exjade about side effects, if any, and also on what it does to your ferritin levels. Many people will soon be making a decision on whether to switch to Exjade and your feedback will be of tremendous help.

Hi Danielle,

Great News.

Is Exjade recomened for small children, say age between 3-5 years.My daughter is on the combination of Desfaral + Kelfer

Thanks, Sajid and Andy.   :hug

Alpa, Exjade can be used in children 2 years of age and older.  

http://www.pharma.us.novartis.com/product/pi/pdf/exjade.pdf

Hello All,

Is there anyone in India who is taking Exjade?
My niece(16 months) got her Ferritin level checked and it was around 1300. She will need to start Iron Chelation now and I was wondering where is it available in India and how can we get it.

The doctor in India where my niece goes for Thal treatment has mentioned Kelfer, but I want to know if Exjade is a better option. I know it is new but I think Kelfer has some side effects which might happen to some and not to other's. I also know Exjade has some side effects as mentioned in the thread but I think it looks a better option than Kelfer. Although, I am NOT a doctor, this is just what I think.

-Narendra

 No, Exjade is not available in India and it will also not be possible for you to get it for her from the USA.
L1 is a better option in India. The amount of L1 or the dose of Desferal vary from person to person. Some do well with a combination therapy, while some are only on L1 and again some are only on Desferal. L1 is widely used in UK too, but for some unknown reason, it is not used in the USA.
L1 is much cheaper than Exjade.
L1 can react adversly in some patients, so it is to be take under supervision. Joint pains and very rarely neutrepaenia can takes place with L1.
So chelation is a process of trial and error.. what suits one might not suit another.
1300 SF is not too high, but obviously chealtion ought to be started soon.
Maybe your neice's doctor could start with a combination therapy and monitor her carefully.
Hope this helps. If you any other questions, please ask.


shikha mitra

Narendra,

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. if so, expect a much lower price than in the US.

you still have a bit of time to make a decision and perhaps you can talk to mr feroz about his niece who has only used kelfer and has developed very well. if you need, I can give you his email address.

if you do choose kelfer, demand only a very small dose for the first month or so while the child gets used to it. most doctors are stupid idiots...yes you are and you know it...when it comes to prescribing kelfer..I can tell you half a dozen people in this group than can give you better advice on starting kelfer than any "well trained" doctor on this planet...and if any doctor wishes to respond, please keep your smugness to yourself cause you haven't got anything to say that this new yorker won't shove back in your face....when we hear the horror stories of patients starting on kelfer and doctors giving way too high a starting dose we really wonder if there is anything in your heads besides medical text books...for God's sake, talk to some damn patients before you kill them! read through the posts in this group and see what your patients think of you...why do so many patients think doctors don't give a royal crap? every morning when you look in the mirror ask yourself this question before you deal with one single patient...show some compassion and for God's sake use some common sense....why start a patient on the maximum dose of any drug before seeing how well they tolerate it? my doc started me on 1/6 of my current dose of synthroid before moving me up slowly to my current dose.....stop taking short cuts and think about your patients rather than your 6 weeks of vacation every year....and why? why do so many of the doctors from poor countries flee their native lands for the riches of western medicine rather than tending to their countrymen?!!!  I don't get paid for this and I have a hell of a lot more compassion for the patients than most doctors do.

OK, I'm done venting for now but some day I will tell the world what the doctors did and didn't do for Lisa and why she would still be alive if the had a clue....it's been over two years but I still am not ready to lambaste the doctors responsible for their completely uncoordinated care and their way too late reaction to her problems. I have no doubt that Lisa would still be alive if the doctors gave a crap about what they do....and maybe I'll share some of my own horror stories of my hospitalization for 18 days for a burst appendix and tell you why only my own stubborn determination kept me alive in spite of the well-trained surgeon's best attemtps to kill me...well, he only got more incompetent and ended up getting sued for sewing a woman's intestines to her uterus. explain that one away...this is the hospital's top surgeon? wow!

Shikha,
I can tell you why L1 is not available in the US. I will say a few words an you can put them together.

Novartis. Political donations. big company has lots more money to pay politicians than small company. exjade approved in record time...every single doctor at the TIF conference recommending kelfer as a superior chelator for the heart. yet FDA still dragging feet on L1. it all adds up to...drug companies are the only industry more profitable than the oil companies and they say what does and does not get approved....we can talk Oliveri til we are blue in the face but her studies have been throughly discredited by 15+ years of kelfer use in India.


it's all about money and even with exjade it's money talks and the rest of you walk. $3500-$5000 per month for exjade... :wtf


just compare the price for kelfer in India to ferriprox everywhere else. what an eye opener that is. Thank God for Cipla...if it wasn't for them my Indian friends wouldn't even be alive and quite frankly I wouldn't even be sitting here posting to you. my early friendship with Indians and Lisa are 50/50 responsible for my commitment to this group and is why my very first conference had to be in India. without the help of Cipla, supplying kelfer to Indian thals, the people who were alive to befriend me and make me more than an observer in this group, would have died many years ago...even now I mourn my dear friend Gurleen and miss her so very much. knowing how much my friendship meant to her has been such a driving factor for me and I cry every time i think about what a rotten fate life brought her. 

 Yes Andy.. all that  long drawn controversy about L1 in the USA.................
 
I too think L1 is a boon to so many patients and has helped them to stay alive.
It just needs a careful  monitoring. It might suddenly act up on some people if the dose is not correct or even otherwise.
Even Exade is not a proven drug yet as Desferal.. we still have to wait and watch how effective this Exjade will be.

So my advice to Narendra would be, as I said to start with a combination therapy of Desferal and L1.. and ofcourse the body weight of the patient has to be considered when the dose of the drugs are to be prescribed. Since Desferal is too painful for a small child it is always good to use an oral chealator along with it.
Narendra, first of all it is very important for one parent of the child to read about Thal, the various treatments that are available, the various chealators used etc.. that is the most important factor in caring for your child I think. Ultimately these children become their own doctors. :smile2

From my own experience and whatever little I have heard from experts, method and dose of any chealator will vary from patient to patient and even reactions will vary. So it is all really a trail and error method. Sometimes at the onset L1 can have a reaction like severe joint pains... which might dissapear after the drugs are stopped and re-continued after a break or a smaller dose is given. Some patients might not react at all. And very rarely Neutropaenea can occur. So it will need careful monitoring for some time.
But I think a combination of L1 and Desferal is the best option available today.

shikha mitra

 And  Andy... I meant to also ask, how is it in Maldives...?? Are they also having a conference?

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 ?

I know it can be too far fetched... but maybe someone can answer my question. :smile2

You have fun and take care....

shikha mitra

Wow Andy! That was really something against those less caring doctors.

Take it easy! I guess the heat of Dubai is catching on you!

There's still the Maldives conference to go to. You might get to face the fact that nothing much has been done since last year except Exjade!

Well, I pray I am wrong.