Taking Exjade (liquids question)

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Taking Exjade (liquids question)
« on: May 30, 2010, 06:43:09 PM »
My 3  year old son started on Exjade four days ago (125 mg. twice daily). We know to give it to him on an empty stomach and then wait 30 min. before he eats.  We have been giving it to him in 100% juicy juice (grape or kiwi strawberry).  Now I see the package insert says water, orange juice, or apple juice.
Here's our situation...he will not take it in water.
He will not drink orange juice.  (He's 3, lived in orphanage all his life, just adopted last month, had never had orange juice, and dislikes it very much.)
Apple juice (even 3.5 oz twice a day) gives him very loose stools and the Exjade is already giving him diarrhea...
Does anyone know anything about why only three liquids were listed on package insert? It does not say liquids such as water, apple juice, orange juice.  It specifically says TAKE WITH WATER, APPLE JUICE, Or ORANGE JUICE.
Is there something about those three liquids that cause Exjade to dissolve better or work better???
Do any of you mix it in any other juices besides apple or orange?
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

*

Offline Andy Battaglia

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Re: Taking Exjade (liquids question)
« Reply #1 on: May 30, 2010, 08:03:52 PM »
Nicole,

I can't say for certain with particular juices, but the restrictions are in place because that's what has been used in trials. This does not mean other juices won't also work. In 2009 CAF released this statement.

http://www.thalassemia.org/index.php?option=com_content&view=article&id=99:mini-qaampa-on-taking-exjade&catid=1:latest-news

Quote
    * Can I take Exjade with orange juice?

    You can take it with water, orange juice or apple juice. (Update:  A patient contacted us and says that a representative from Accredo, one of the pharmacies that handles Exjade, informed him that Exjade can also be taken with Gatorade or Kool-Aid.)

We can also note that Dr Neufeld feels that the metal spoon prohibition with Exjade is probably not necessary because the amount of metal possibly chelated by the Exjade would be trivial.
Andy

All we are saying is give thals a chance.

Re: Taking Exjade (liquids question)
« Reply #2 on: May 30, 2010, 11:46:39 PM »
Nicole,

I can't say for certain with particular juices, but the restrictions are in place because that's what has been used in trials. This does not mean other juices won't also work. In 2009 CAF released this statement.

http://www.thalassemia.org/index.php?option=com_content&view=article&id=99:mini-qaampa-on-taking-exjade&catid=1:latest-news

We can also note that Dr Neufeld feels that the metal spoon prohibition with Exjade is probably not necessary because the amount of metal possibly chelated by the Exjade would be trivial.

Thanks Andy,
When I meet with Dr. Neufield at the end of June, I'll ask him also about his feelings about the juices (grape vs. OJ/Apple). 
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

 

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