Oral iron chelator Exjade (ICL670)

Is anyone currently taking the oral iron chelator Exjade (ICL670) being marketed by Novartis? Has anyone ever taken this drug in the past? Is anyone willing to share their experience of being on this drug?

My doctor won't prescribe it to me because he says it causes "Bone Marrow Failure" which I have never heard of.     I'd love to try it, though.   

I have just started a 3 month trial on Exjade (Novartis). So far it has been a month and things are going ok. The drug is in the form of a tablet that you need to dissolve in water or juice and take on an empty stomach. (It tastes like ur gulping down chalk mixed in water). So far its been a month on Exjade, and I have had a few of the mild side effects, nothing too serious. After 1 month Im seeing a decrease in ferratin levels, but its only been a month and this could be just random fluctuations in the levels. It will be another couple months before we can tell for sure if Exjade is right for me.
Before Exjade I was on Desferal - that was going good, except for those darn compliance issues  . To bring my ferratin down further my doctor thaught I should give Exjade a try for 3 months. (not in combination with desferal, ...yet).

I hope this info helps.

If anyone else is on Exjade, I would like to know what kind of ferratins ppl are dealing with before and after Exjade.

Take care all

Sal

My doctor won't prescribe it to me ...... I'd love to try it, though

You mean you can't go and get the drug if your doctor won't prescribe it for you? 
What about beating up on the doc, then? Or self-prescription?

  I guess the US system is a *bit* different from India, then. Here, I tell the doctor what I want ......

 

I guess the US system is a *bit* different from India, then. Here, I tell the doctor what I want ......

Same in Pakistan. I asked my doc and he said "O.K, try if you want to on your own. If we get the drug will first test it on our own, get NOC from governmet and then apply for import licence and :blah and then prescribe it"

I got a deal from my Chemist and he says that he will "try" to get it from the same channel as he gets the cheaper Desferal for me. I hope he gets it soon!!

So True, In Pakistan we get the way Sajid told hehe! its awesome, isnt it :P

My doctor won't prescribe it to me because he says it causes "Bone Marrow Failure" which I have never heard of.     I'd love to try it, though.   

I have looked over the contraindications (warnings) for Exjade use, I dont see anything that concerns "bone marrow failiure." There are however concerns about kidney, liver and special senses (vision and hearing) issues. All these issues are being monitored monthly by my doctor. There are some general precausions as well for pregnancy, nursing mothers, and for children. Adverse reactions occoured in less than 5% of pateints on the Novartis trial, and I couldnt find anything pertaining to bone marrow issues.

Ofcourse I could be overlooking something. But you can find out for yourself the details about exjade from their website. Everything about their trial is given in the prescribing information document. I guess I would at least discuss the risks and benefits of Exjade with your doctor, if you are really thinking about exjade.

I read over the stuff a zillion times before making up my mind. I cant say there is absolutely no risk involved. If you want anymore information, please let me know. Hope this helps

Sal

You mean you can't go and get the drug if your doctor won't prescribe it for you?

Nope.   

You'll just have to come visit me and bring some with you, Poirot.   :flirt

I have looked over the contraindications (warnings) for Exjade use, I dont see anything that concerns "bone marrow failiure." There are however concerns about kidney, liver and special senses (vision and hearing) issues. All these issues are being monitored monthly by my doctor. There are some general precausions as well for pregnancy, nursing mothers, and for children. Adverse reactions occoured in less than 5% of pateints on the Novartis trial, and I couldnt find anything pertaining to bone marrow issues.

Ofcourse I could be overlooking something. But you can find out for yourself the details about exjade from their website. Everything about their trial is given in the prescribing information document. I guess I would at least discuss the risks and benefits of Exjade with your doctor, if you are really thinking about exjade.

I read over the stuff a zillion times before making up my mind. I cant say there is absolutely no risk involved. If you want anymore information, please let me know. Hope this helps

Sal

Thanks, Sal.  I have never heard anything about bone marrow failure either, and I think my doc is just saying that because he doesn't want to prescribe it to me.  He's done crazy things in the past, so I wouldn't put it past him.   

Are you finding that Exjade is hepling you, Sal?  How is your ferritin?  What kind of side effects have you gotten from it?  Also, is the hearing/sight impairment that Desferal gives, the same as what Exjade gives, or is it worse/less?

Thanks for the info.   

You'll just have to come visit me and bring some with you, Poirot.   :flirt

Awwwww ....... I most certainly have to visit you now .....
Let's see now, when am I next in NYC? Probably May .... hopefully you should be done with your blizzards by then. 

 

He's done crazy things in the past, so I wouldn't put it past him.   

This may be a stupid question, Danielle, but why don't you just change your doctor?
Why would you want to tolerate a "crazy" doc?

 

Awwwww ....... I most certainly have to visit you now .....
Let's see now, when am I next in NYC? Probably May .... hopefully you should be done with your blizzards by then. 
 

You're coming here in May, Poirot ... or are you pulling my leg?  hahaha.     You're not going to the conference in LV?   

This may be a stupid question, Danielle, but why don't you just change your doctor?
Why would you want to tolerate a "crazy" doc?
 

That's not a stupid question at all.  I get that same question from many people, because they cannot understand how I'm still with this guy after all he's done (or NOT done!).  It's very hard to change doctors over here, because not many of them treat Thalassemia.  I'm actually meeting with a new doctor on March 1st who treats Thal, and hopefully I'll like him.  If I end up with him, I'll have to change hospitals, though ... and that's gonna be rough.  The hospital that he's affiliated with is not very close to me.   

You're coming here in May, Poirot ... or are you pulling my leg?  hahaha.     You're not going to the conference in LV?   

I am usually in NYC 3-4 times a year due to work, and most probably I will be there in 2H of May.

Unlikely to be in LV for the conference, though. I heard about the dates for the LV conference only after Ashish came back from the Dubai one, while I had already planned a holiday trip in the 1H of May. So, does look quite unlikely .... hopefully will be there for the next conference.

It's very hard to change doctors over here, because not many of them treat Thalassemia.  I'm actually meeting with a new doctor on March 1st who treats Thal, and hopefully I'll like him.  If I end up with him, I'll have to change hospitals, though ... and that's gonna be rough.  The hospital that he's affiliated with is not very close to me.   

Ah, that's tough    .... the crosses we have to bear. Can you not use a "normal" GP who you like and who is close to your home/hospital? After all, s/he can always refer you to a specialist if required? In any case, we "know" more than the doctors do, usually!
I have been doing this successfully for the last few years, but then, I do not have to deal with US insurance issues either! 

Ah well, good luck :smile2

Thanks, Sal.  I have never heard anything about bone marrow failure either, and I think my doc is just saying that because he doesn't want to prescribe it to me.  He's done crazy things in the past, so I wouldn't put it past him.   

Are you finding that Exjade is hepling you, Sal?  How is your ferritin?  What kind of side effects have you gotten from it?  Also, is the hearing/sight impairment that Desferal gives, the same as what Exjade gives, or is it worse/less?

Hi Danielle, Its still pretty early for me to tell if Exjade is working. I am noticing a downward trend in ferratin, but cant say for sure as it has only been a month or so. I will keep you updated on my progress though. As far as side effects go, I have been having some minor trouble with abdominal pain. Before I started Exjade I had a full workup done on my vision, hearing, liver and kidney function. I will be repeating those studies in the next 2 months or so to see if there has been any change due to Exjade. Again I will keep u posted.

Sal

I am usually in NYC 3-4 times a year due to work, and most probably I will be there in 2H of May.

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