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Advice about Iron Chelator

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Offline Dharmesh

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Re: Advice about Iron Chelator
« Reply #15 on: November 27, 2013, 08:38:44 AM »
Ritesh,
ur scan result is good.
Just split the dosage of Asunra , half in the morning and half in the evening. It will give true 24/7 chelation.
Don't worry about Ferritin.
However, u need to repeat MRI every year to see the actual progress.
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Offline Hemendra

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Re: Advice about Iron Chelator
« Reply #16 on: November 27, 2013, 12:49:02 PM »
Quote from: Sharmin on November 26, 2013, 05:20:02 PM
Hemendra,

Try splitting the dose so that you're giving half in the am and half in the pm.
Ferritin isn't always a good indicator of liver iron - and inititially ferritin levels
Increase with exjade because iron is released for the organs into the plasma to he excreted.
Continued use of exjade, dose split to twice a day should decrease your child's iron levels and this
Will eventually be reflected in the ferritin level.

Best of luck,

Sharmin
[/quo

Thanks Shramin

We had few doubts

Our Doctor had informed that Desirox should be taken empty stomach only & after taking medicine
at least for Half hour any thing should not be eaten so while taking half dose in evening what should be ideal period before and after taking medicine where no food can be taken.
Further we adding sugar in water my daughter is not drinking it with plain water.
Last week we had checked ferritine was done at the time of transfusion & hemoglobin level was
at 10.7 which is unusually high. Generally it goes down to around 9 to 9.5 at the time of transfusion. Is there any relation between this & high ferritine level.
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Offline Sharmin

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Re: Advice about Iron Chelator
« Reply #17 on: November 28, 2013, 04:49:39 AM »
Hamendra,

We no longer give our son exjade on an empty stomach - in fact we ensure that he has it after a big meal.  Recent trials have shown that exjade is just as effective with food as it is on an empty stomach.  Before these trials it was thought that perhaps exjade degrades or reacts with food in the stomach - but it does not appear to be the case.  Splitting the dose and giving exjade with food is very effective.  In fact, giving exjade with food alleviates some of the side effects.   I wouldn't recommend giving your child sugar in the exjade water.  Below is the method that we have found most effective:

1.  Obtain a plastic cup and plastic stirring spoon
2.  add exjade into the cup (we usually break it into a few pieces) and then fill the cup 1/2 way with lukewarm water - allow the pill to
     dissolve and then stir mixture with plastic spoon. 
3.  add a few mL of orange juice (or juice of your choice) - mix again

you can then serve the drink to your child.  Follow up with a lot of water throughout the day to increase excretion of iron and decrease the risk of toxicity. 

I hope that this is helpful,
Sharmin
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Offline Dharmesh

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Re: Advice about Iron Chelator
« Reply #18 on: November 28, 2013, 10:07:56 AM »
Hi Hemendra,

You can shift to Defrijet (orange flavour tablet) from Desirox. Both are the same medicine Deferasirox. This will solve ur problem of bitter taste. Otherwise , u can follow Sharmin and add some juice of orange to it.

Moreover, Do not ask for ferritin when ur baby is having fever, infection, cough or cold. Ferritin highly fulcuate while infections  and fever.

Desirox takes times to reduce ferritin, sometimes it shows effect in ferritin after 6-24 months.

Compliance is a tough issue with Desferal or Kelfer. So stick to Desirox and keep patience.
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Offline htuongvy

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Re: Advice about Iron Chelator
« Reply #19 on: November 28, 2013, 02:45:47 PM »
Hello,
I am new here. I have a 4 yrs old son with beta thal and HB E. He get blood transfusion 4 times (from May 2013 till now)His ferritin is 480. Does he need to use iron chelation medicine ? If yes, please give me your advice what medicine is the best for using. Moreover, what supplement  he can use ? I have read "Yummi bear" is good for thal. Pls give me any supplement medicine that is good for him.
Thanks a lot.
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