Discussion Forums > Thalassemia Major

Advice needed on taking Exjade

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Noreen K:
Hi,

I am a Beta Thal Major patient and I need advice on taking Exjade.

For years I have been on Desferral and Ferriprox however I wasn't very good at being compliant with it. Therefore, as I really wanted to get my ferritin down I switched to exjade. My Doctor has worked out that for my body and weight my minimum does is 750mg and the maximum is 1250mg. I have been on the 750 mg dose and it does work for me as my ferritin has been going down slowly, however when increasing the dose to 1000 mg I cant cope with it. it makes me feel nauseous, weak and causes me pain. My Doctor has advised that I do need to increase my dose and move up from the minimum amount.

I'm not sure what to do. Should I just stay on the 750 mg dose? Or is there something I should be doing when taking the higher dose? Is it normal  to get these side effects when going on a higher dose?

please help

Noreen   

Andy Battaglia:
The easiest thing to do is split the dose and take half a dose twice daily. It decreases nausea and gives a true 24 chelation period. You can also experiment with how you take it. You can mix it with most soft foods and you can even take it after meals, if that helps. The only precaution is don't take it with high fat foods. You do need the higher dose so definitely try splitting the dose.

Noreen K:
Hi Andy,

Thanks for getting back to me and for your help!

just to clarify, so do I still make the dose as normal but then only have half first and then the other half later. How much gap can I leave between the two doses? What do you mean by mixing it foods?

I will try your suggestions and hopefully it helps :)

thank u

zahra:
Hi Noreen,
A split  dose is ideally 12 hourly but doesn't need to be exact.
Many of the problems with exjade dissappear when you don't take it on an empty stomach.
Its ok to take it with food as Andy said just not high fat ones.
My son used to vomit if I gave it to him in the morning but is fine an hour after a meal. So I am sticking with that but others are using exjade successfully with food.
I hope your issues will resolve soon. The bonus of a split dose is it reduces ferritin faster.
Wish you luck.
Zahra

Andy Battaglia:
Noreen, you can crush the tabs and mix them with soft foods.

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