Discussion Forums > Thalassemia Major

Advice needed on taking Exjade

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cybermariner:
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.

Noreen K:
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.

Laura:
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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