Exjade

Hello everyone,

My name is Arthur.   And I am new here.   Danielle led me to this site.    I have a question about the new drug Exjade.   Is anyone on it and if so what has been your experience with it so far?   I just started it on Feb. 11th.   About ten days now.    So far I have been able to tolerate 2 pills a day, but 3 pills has been no good. (bathroom wise).  That's as much as you need to know.  You can guess the rest.   I have heard of rashes but that's it.     Does anyone have any further info on Exjade??     

I'm so glad you're here, Arthur!  Good to see you. 

We have a handful of Thals who are on Exjade right now, so I'm sure someone can help you.   

Arthur:

Please see my post on the Poll: Which iron chelator do you use? thread. I have been on it for about seventy days now. I started with the same GI issues and stomach cramps. However, during the past two weeks I am pretty much back to normal. I am taking 1750 mg per day.

So much easier than Desferal therapy.

Barry

She dissolves it in water, as the orange juice didnt work out. The tablets dissovle better and faster with water.
Hope this helps...
Shikha Mitra

Try this little trick that one kind nurse told me when I was too small to swallow a relatively big Vitamin C pill.

She put the pill on a spoon and took another spoon and crushed the pill to powder by the back side of the other spoon(as if you place one spoon in the other only with the pill in between them). Then she told me either to swallow the powder with some water or disslove it in juice etc.

I guess exjade will taste better in jucie than water. This will make it more palatable and no changes in the composition of medicine occurs as this is only a crushed form of the solid pill.

You guys are lucky to have access to Exjade, In Canada we have same old politics and slow pace of approval going on. Health Canada is tightlipped and hospital denies any news. I think it will be year or so until we may have limited access for few patients.

Damn those needles!!!!

Just to add to the conversation, I am now the proud owner and user of Exjade!  I've been on it for about 2 or 3 weeks now and so far so good.  I just had my ferritin done yesterday, and it's 1100, so it has gone down (not sure if it's the Exjade or the Desferal, though).  I'm still on Desferal, but I'm being cut down a few days for now.  Once my doctor sees that my ferritin is going down more, I think he will cut me off of the pump.  I cannot wait for that day.  I've been waiting 25 years for this drug, and I thank the Lord that I'm living today to see it and be able to use it.   

Canadian_Family, I'm so sorry to hear that you guys don't have access to Exjade over there yet, but please hang in there.  The day will come sooner than you know.  I've been waiting for so many years, and now I finally have it in my possession.  I know your day will come as well.   :hug

Danielle,

Do you know of anyone else using both desferal and exjade? I've heard people say that you can't use them together although I don't know what the reason would be for that.

My doctor has specific orders not to cease Desferal just yet.  He wants to make sure that the Exjade is working before removing the DES, because if the Exjade isn't working, then my ferritin will go up.  I asked him about taking them together, because I have read that you shouldn't, but he told me that it's completely safe for a limited time.  I'm not going to be on the DES for much longer.  Novartis says, and I quote, "Deferasirox (Exjade) should not be combined with other iron chelation therapies as the safety of such combinations has not been established" but my hematologist has had experience with his patients being on both and told me not to worry.  I think Novartis doesn't want patients being on both, because they are afraid of the ferritin dropping too low.  I was told that they know a lot about the chemical compounds, but very little about Thalassemia, so if there isn't an issue with the chemical compounds of the drugs being combined, then I'm going to take my chances on listening to a hematologist who is very Thal-oriented.    

I'll have to keep my fingers crossed on this one.  I'm in uncharted territories now.  

I also need to add that this doctor isn't the doctor that I've been complaining about.  I have found a new hematologist who specializes in Thal, who is absolutely wonderful, and has been taking care of me very well the past month.  I'm very happy with him, and I'm finally getting the care that I need.  That's something that I've never had in my life. 

So anyway, if something should happen to me, I'll leave a note for someone to tell you guys that DES and Exjade should definitely NOT be combined.      

I think the main reason doctors are reluctant to use Exjade along with another chelator is because Exjade hasn't been tested with other chelators yet. As always Danielle, you get to be the guinea pig.

I think the main reason doctors are reluctant to use Exjade along with another chelator is because Exjade hasn't been tested with other chelators yet. As always Danielle, you get to be the guinea pig.

I agree, Andy.  I think that is the main reason.  Unfortunately, I think most of us are considered guinea pigs.  Especially the older crowd, because Thalassemia is only becoming more widely known now.  When many of us were little, even Desferal was considered "venturing into the unknown."   

All I know is that I've been waiting for an oral chelator since I was 5 years old, and if I have the chance to finally see what it's like to not have to worry about that painful pump every night of my life, I'm going to try it.  I cannot say what it's going to do to me, but whatever happens, I'm sure they will use the knowledge to help others in the future.   

I also need to add that this doctor isn't the doctor that I've been complaining about.  I have found a new hematologist who specializes in Thal, who is absolutely wonderful, and has been taking care of me very well the past month.  I'm very happy with him, and I'm finally getting the care that I need.  That's something that I've never had in my life. 

Hey Danielle,

Well done!!!! 
Really happy that you are getting some 'quality' care now .... keep well.

Poirot

Thanks, Poirot!    I'm very happy about it myself.  I think it's about time that I get the care that I need.   

Danielle,
     It is so wonderful that you are having some positive things happening in relation to your health - you deserve it after all the traumatic things that have happened to you. Hope Exjade does the jpb with no side effects, and to have a caring doctor! That is what we all hope to have.    Jean

Hi

To those who have started with only Exjade and not doing any combination therapy..

Can anyone tell me how long  it take for the Exjade to show results?

Suppose you have started with Exjade with the SF at a certain level, then how long does it take to show that there is a change in the SF reading?

Anyone who was on the trail maybe able to help, since the regular availability of the drug is just about 3-4 months..


shikha mitra

Some say that it takes a few months, but I had results in 6 weeks.  My ferritin 6 weeks prior to Exjade was 1600, and 6 weeks later it was 879.