Advice needed on taking Exjade

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   

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.

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

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

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

Hi guys,

Thank you for your suggestions. I tried them however it still did not work for me... I just think maybe my body can't handle taking 1 g. Even with trying the different ways I still experienced excruciating pains. Has anyone else experienced this?

750 mg does not cause me any problems so I need to now decide what to do. Im a bit scared to take exjade again as I am scared to put myself through the horrific pain.

Noreen

Noreen,

You may have to consider combination chelation using another chelator along with Exjade if your current dose is not sufficient chelation.

Little Miss A had the same problem. We resolved the issue by splitting the dose. You have to be consistently taking exjade to overcome the side effects, it takes time. Following is just the suggestion.

She is taking 250mg in the morning (around 8:00am) after breakfast.

Another dose of 250mg around 8:00pm almost one hour after dinner.

It took a month or so until she overcame the abdominal pain issue after splitting the dose.

I think you should not give up so easily, be patient.....I think if you can easily take 750mg than 1000mg should not be an issue

I am now even pushing to 1800mg these days (from 1600 to 1800) with ease. And my SGPT also stays sexy (hehe) these days. It's really a pleasure that I am sort of well adjusted to Exjade. And I also don't get why some people (not talking about kids as, oh well, they're kids haha) complain about the taste of Defrasirox (Exjade/Desirox), it's just like water. I drink it all in one time without vomiting or feeling any bad odor or taste.

Anyway, yes, splitting dosage is what you need. It has benefited me immensely and has also helped me with the SGPT and SGOT (ALT/AST) levels as it gives less load to them.

My advise would be to order 100mg tablets as well and go on from there - i.e. try to increase the dose gradually. For example, you are on 750 right now, right. Then add 100mg and make it 850 (of course, split it in 2 times as people say) and take it for a week. Then if you feel nice and great after a week of this increased dosage, add another 100, wait another 4-5 days and see how you feel, and go on likewise. Once you can achieve more 400mg, instead of those 4 tablets of 100mg, you can add 400mg now that you have increased your tolerance.

I am sure it may help you.

And oh, the idea time for splitting the dosage is 12 hours and in my case, I can easily manage it. For example, when I wake up in the morning at 7 AM, my father or mother has already prepared it half an hour ago and I would drink it (and go back to sleep again till 10 AM :P). Then when I take some tea and snacks at 6:30 or 7:00 PM (so you can see its 12 hours, from 7 in the morning to 7 in the evening) I drink the other half again and it works very well.

Hope that helps.

-P.

I am now even pushing to 1800mg these days (from 1600 to 1800) with ease. And my SGPT also stays sexy (hehe) these days. It's really a pleasure that I am sort of well adjusted to Exjade. And I also don't get why some people (not talking about kids as, oh well, they're kids haha) complain about the taste of Defrasirox (Exjade/Desirox), it's just like water. I drink it all in one time without vomiting or feeling any bad odor or taste.

Anyway, yes, splitting dosage is what you need. It has benefited me immensely and has also helped me with the SGPT and SGOT (ALT/AST) levels as it gives less load to them.

My advise would be to order 100mg tablets as well and go on from there - i.e. try to increase the dose gradually. For example, you are on 750 right now, right. Then add 100mg and make it 850 (of course, split it in 2 times as people say) and take it for a week. Then if you feel nice and great after a week of this increased dosage, add another 100, wait another 4-5 days and see how you feel, and go on likewise. Once you can achieve more 400mg, instead of those 4 tablets of 100mg, you can add 400mg now that you have increased your tolerance.

I am sure it may help you.

And oh, the idea time for splitting the dosage is 12 hours and in my case, I can easily manage it. For example, when I wake up in the morning at 7 AM, my father or mother has already prepared it half an hour ago and I would drink it (and go back to sleep again till 10 AM :P). Then when I take some tea and snacks at 6:30 or 7:00 PM (so you can see its 12 hours, from 7 in the morning to 7 in the evening) I drink the other half again and it works very well.

Hope that helps.

-P.

Dear P
I am on 2500mg per day by split and weight is 49-50 kg.
with desferal 20mg/kg
still fe is not decreasing.
 u should consider adding another chelator.

Hi Noreen;

Just for your information;

My five has weight of 62Kg and having Exjade 1250mg daily. But as per doctors advice we take it in the morning, half hour ago before eating anything (empty stomach) as solved in a cup of water, without using any metallic material like as spoon,etc to commingle it. So once a day, by swallowing whole cup.

Her fe levels usually stays around 400.

But this problem looks alike stomach problem, and i suggest you to ask an advice from nutrition specialist doctor to handle the matter with all spectrum.

Hoping you good health.

Hi cybermariner

Thanks for your advice, it is much appreciated.

I am due to have my clinic appointment with my Consultant next month so we will discuss it then. in the meantime we have discussed it and decided for the interim I take a dosage of 750g as it is decreasing my feritin and not causing any problems. I have tried taking 1g on 3 different periods, first time it gave me a really bad and itchy rash, second time it made me feel ill and third time was when I experienced excruciating pain. The thing is I keep giving it more time as I work full time and as understanding my team are I cant keep taking days off and letting my colleagues and patients down.

My weight is 45kg and my consultant has said that my max dose for me is 1250mg. Since taking exjade though, despite it only being around 5 monthd my ferritin has gone down considerably.

Hello all,

I have similar feelings when I take Exjade.  It depends on the day but for my experience, I would say it is half real sickness and half psycological.
In my case, the fear to feel bad and not being able to do what I am supposed to at work or whatever and that makes me not to be compliant with Exjade.
At the beggining I was doing more or less good with it but now it 's being harder so I started visiting a psychologist because of thal and she's doing very good to me.
The week after talking to her, I feel really motivated to taking Exjade and it is really rare to feel very sick or bad after taking it. That's why I say it has a psychological part.

I hope you find the way to solve the problem, I am still working on mine.


Kisses,

Laura


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