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55001 Posts in 5847 Topics by 6100 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Label Change for Exjade-Important!  (Read 23430 times)
princess
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« Reply #15 on: November 16, 2011, 07:42:01 AM »

hello friends ,
i need your help.my daughter is 7 years old.she has thalassemia major and gets every 3 week bloodtransfusions.we are from lebanon and live in germany.she has been taking exjade since she was two years old.there had never been any complications.the value of ferritin has decreased the first time to 750.the last months iit was between 750 and 1400.

now i am helpless.two weeks ago she got ill.i thought that it would be a gastrointestinal virus.one week later she vomited a lot of blood.then she got an endoscopy and they found a gasrtic ulcer with gastrointestinal bleeding.the doctor was shocked when he saw this gasrtic ulcer.he said he had never seen a child with such a gastric ulcer.

the doctors had no idea why that happend.but i have informed myself  and understand that it is a sideeffect of exjade.i have looked at the liver values and i have noticed that the last bloodtest indicated an increased liver value of GOT,GPT of 670.  i think that the docotor who is treating my daughter because of thalassemia  had have to notice much earlier the increased liver values.

now we have stopped exjade.and i don´t know what to do.the docotors said to me it is my
dicision.i don´t have any experience with desferal.do you think we can start again with exjade when her body has recovered again.
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Sharmin
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« Reply #16 on: November 16, 2011, 12:04:51 PM »

Princess,

I am very sorry to hear about your daughter's ulcer.  It is very likely that the ulcer was caused by the exjade.  Had you been giving her exjade on an empty stomach?  Also, we she getting a single dose or was she getting a divided dose twice daily?   

Many people have found that taking half the dose twice daily is best, and taking exjade after a meal protects the stomach.  We have noticed that our son's stomach troubles and subsided and his appetite has increased since we began giving him exjade immediately after dinner.

For the time being my advise to you would be to discontinue exjade until her stomach issues have subsided completely.  Do you have ferriprox available to you?  Our son used desferal for 8 years and did well with it (we are currently on exjade).  If I were in your situation I would use an alternate method of chelation for an extended period, until the situation completely resolves.  If and when you decide to resume exjade - I would recommend starting on a very very low dose, and event hat dose split so that she is taking it twice a day - after a meal each time. 

With exjade, ferriprox and desferal - all blood labs need to be viewed carefully - changes in labs should be investigated as soon as possible. 

I wish you the best - please keep us posted.  I wish your daughter the best,

Sharmin
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Sharmin
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« Reply #17 on: November 16, 2011, 09:40:23 PM »

Hi Princess,

Gastrointestinal bleeding is one of the three main side effects associated with Exjade. A Q&A that discussed this can be seen at
http://www.thalassemia.org/index.php?option=com_content&view=article&id=92:label-change-for-exjade&catid=1:latest-news

Once the ulcer has healed, it is possible to re-challenge her with Exjade if your doctor agrees to it. I agree with Sharmin that it should be taken with food and splitting the dose into two and taking half in the morning and half in the evening will help minimize the chance of recurrence. In the meantime, desferal is the only chelator to use until the stomach is healed.
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Andy

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adeel
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« Reply #18 on: November 17, 2011, 03:29:37 AM »

Hi All
I am alittle confused here can we take exjade with meals? Cause in my knowledge it can only take with a empty stomach
Best regards adeel
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Andy Battaglia
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« Reply #19 on: November 17, 2011, 09:16:58 AM »

Hi Adeel,

The advice has changed. Exjade can now be taken with many foods. See the pdf file attached to the post at
http://www.thalassemiapatientsandfriends.com/index.php/topic,4051.msg40379.html#msg40379

In addition. we have had people within our group switch to splitting the dose into two and taking twice daily, as this also helps lessen the nausea and stomach discomfort, while giving a true 24 hour chelation period. The most important thing is finding ways to make Exjade more tolerable. If taking it with meals makes it easier, it should be done.
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Andy

All we are saying is give thals a chance.
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