Discussion Forums > Thalassemia Major

Exjade

(1/3) > >>

Darlene:
I met my son doctor today to ask whether my son are appropriate to use the exjade. I was told that the use of Exjade is only preferred to the children under 8 years. Is it true?. My son is 9 years now and his last ferretin cheked on August 2012 is 5434.quit high..The doctor only suggest me to use the desferal and L1 (4 capsul/day)..I also asked the doctor about wheatgrass but she asked me not to bother anything which were mentioned in the internet about thalassemia..any advice? :dunno

Pratik:
Hi Darlene,

Welcome to Thalpal.

No, it's not true. Exjade can be used with person of any age. All she is saying is not true.

What's your son's weight?

You can continue Exjade as per 30mg/kg.

Also split the Exjade dose in half, taking one half in the morning and other half in the evening to achieve 24 hours chelation. Myself and a lot of people here take it in split dose and are already achieving nice result with it.

My ferritin 4 months ago was 5982, and as per recent report, it's 5354. It's showing constant decrease now.

Do let us know his weight and his current dosage; don't worry, the ferritin will reduce.

Darlene:
Hi Pratik,

Thank you for you info. My son current weight is 23kg.  I've tried to persuade the doctor that maybe the exjade are suitable for my son, but she gave me a lot of excuses not to give the exjade to my son. one of the reason is the exjade is very expensive in our country. My girl friend son also a Thall Major but her son were given the exjade as his Thall treatment. But we are not receiving the medical treatment in the same hospital. They receive the treatment in our Medical centre hospital in the city whilst we at our home town hospital..actually the doctor whom i met today is the same doctor my girl friend son specialist. The doctor suppose to know the benefit of the exjade, right?

I'm so frustrated when i know that the doctor is lying to me..to my son..it's a heartache Pratik..why my son been excluded to receive the treatment?.so unfair..

Do you think i can use the exjade without informing my son doctor? without doctor advices?.

Canadian_Family:
I would not advise using exjade without doctor's approval. However, please tell your doctor that you intend to use exjade instead of L1 or desferal. Force your issue and stick to your plan. I am not even sure why doctor is not recommending exjade (there is something wrong here).

Darlene:
HI Canadian,

Thanks for the advice..

The doctor did not gave me any strong reason for not giving my son the Exjade. She said my son is in good condition and the feritin is normal. asked me not to worry. just continue to use the desferal and L1.does the feretin at 5434 level is normal?.The doctor also informed me that actually the supply of Exjade is only limited for the Thal patient in our medical centre hospital. Atleast, they can figure it out how to get the supply right? and she cannot say that the Exjade is only for under 8 years..as like Patrik mentioned.

Navigation

[0] Message Index

[#] Next page