Exjade

  • 11 Replies
  • 9037 Views
Exjade
« on: September 28, 2012, 07:53:20 AM »
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

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Exjade
« Reply #1 on: September 28, 2012, 09:57:14 AM »
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.
Every child is special.

Re: Exjade
« Reply #2 on: September 28, 2012, 12:09:58 PM »
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?.


Re: Exjade
« Reply #3 on: September 28, 2012, 12:44:41 PM »
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).
Regards.

Re: Exjade
« Reply #4 on: September 28, 2012, 01:03:10 PM »
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.

*

Offline Andy Battaglia

  • *****
  • 8724
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Exjade
« Reply #5 on: September 28, 2012, 05:20:35 PM »
The ferritin is too high. I would not suggest Exjade in this case because you need better chelation and the cost makes it impossible to get enough Exjade to make a difference. There is no better chelation method than the combination of desferal and L1. It will help your child as long as chelation compliance is followed.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

  • *****
  • 608
  • Gender: Male
Re: Exjade
« Reply #6 on: September 28, 2012, 05:47:37 PM »
The ferritin is too high. I would not suggest Exjade in this case because you need better chelation and the cost makes it impossible to get enough Exjade to make a difference. There is no better chelation method than the combination of desferal and L1. It will help your child as long as chelation compliance is followed.
:agree
Darlene,
I Agree with Andy.
If your chelation plan is going on with L1 + DESFERAL then this is the best and widely accepted combo in the world. If L1 is well tolarated by your son then you should continue with it as it's is the best Cardio Protective drug.
Exjade alone is not suitabel for high iron overload. And Cost as well as supply is the factor to be considered.
Your dose of L1 looks ok. What is the prescribed dose of Desferal.
As and when the S.Ferritin and T2* Score get ok , you can discontinue desferal.
Start listening your body, it always gives signs

Re: Exjade
« Reply #7 on: October 19, 2012, 03:22:42 PM »
Hi Everyone

my friend is also a thal patient  and she has 4500 ferritin

the doctors here in greece have put her on exjade and desferal (combination)

she can not take feriprox because it lowers her white blood cells so thats why the doctors have given her that combination

she is 29 yrs old , 54 kilos   and she drinks 1500 mlg exjade and 4 bottles of desferal everyday

now she seems to be haveing stomarche aches and a cough that they cant explain where its comming from

she has been hospitalised several times for her stomach aches

could this be wrong this combination???

*

Offline Andy Battaglia

  • *****
  • 8724
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Exjade
« Reply #8 on: October 19, 2012, 03:45:25 PM »
Tell your friend to try splitting her Exjade dose into two, taking half in the morn and half later in the day. She can also try mixing it with soft foods to make it more tolerable. If this does not work for her, Exjade may either have to be discontinued or the dose lowered, with a corresponding increased dose of desferal.
Andy

All we are saying is give thals a chance.

Re: Exjade
« Reply #9 on: October 19, 2012, 04:22:20 PM »
Will do thank you Andy

Re: Exjade
« Reply #10 on: October 19, 2012, 07:43:48 PM »
ok well im 32 yrs old

my ferritin is 5900 

ive been taking exjade 8 months now im 72 kg

and the doctor gave me to drink  4 x 500 gm  1x 250 gm 1x 150 gm

They told me to drink that every morning before haveing anything to eat and to drink it with orange juice so i did
but then i started getting like heart burns so they told me to start drinking it with apple juice
 heart burns are gone but i get like a stinging feeling in my stomach and sometimes i get a rash that realy icthy  but they told me its nothing serious
 to be honest alot of my friends (thal) that are on exjade have lots of problems and im a bit scared   i would like to go back to feriprox and desferal

u see i have no iron overload in the heart but i have too much in the liver and doctors says that exjade is the best for liver


is that true?

*

Offline Andy Battaglia

  • *****
  • 8724
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Exjade
« Reply #11 on: October 20, 2012, 04:11:37 AM »
Exjade seems to remove liver iron better than Ferriprox, but combination desferal and Ferriprox works best. When starting Exjade, the rash can be minimized or avoided completely by starting with a dose of 1/3 to 1/2 the required dose. After two weeks, the dose can be raised. If you have stomach discomfort from Exjade, try splitting the dose into two and take half in the morn and half later in the day. In addition to less stomach discomfort, it actually chelates better because you get a true 24 hour chelation. This has been tried by dozens of members of thalpal and every single one has reported a drop in ferritin.
Andy

All we are saying is give thals a chance.

 

SMF spam blocked by CleanTalk