Discussion Forums > Thalassemia Major

Question for Andy...

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aus:
My son is now 7 and a half years old. He had a ferriscan 3 years ago. The iron level around the organs were considered good at that time. The doctor is not too willing to have another ferriscan for a while. His ferritin level is around 1000. He is taking exjade solely. Never had any other type of chelation before. He started exjade at the  age of 3. Should he be doing more checks?

Andy Battaglia:
Annual tests are recommended. At some point, a T2* scan of the heart should also be done, as liver iron levels don't correlate with heart iron levels. Ferritin tests are good for regular monitoring, but organ iron has to be evaluated, also.

http://www.thalassemia.org/updates/R2T2.pdf

--- Quote ---How often should these tests be performed?
Ideally, these tests should be performed yearly, as part of a
thalassemia patient’s annual comprehensive care
examination.
--- End quote ---

Emby:
Hi Andy...just a quick update on my younger son's reaction to Exjade. The rash completely disappeared in exactly 1 week. He was covered in the rash from head to toe but continued with Exjade and also took Piriton 3 x daily. when it came it spread quickly all over about after 1 week of starting on the medication with slight swelling on his face and lips and was really itchy. And when it started to disappear, it was a bit weird, it first went away from the face then neck then chest, arms working its way down the whole body.
He was taking 1500mg (split dose) but now he takes 2000mg daily.
.......Now he has started wearing braces.... Is it okay to drink the Exjade solution as normal even though it comes into contact with the metal in the mouth or to use straws?

Andy Battaglia:
Hi Emby,

The original warnings about metal and Exjade were out of concern over a reaction, but it turned out that the concerns were unwarranted. Don't be concerned at all about the brief contact with the braces. I'm glad to hear that the rash cleared up as expected.

Emby:
Thank you Andy...he will be happy to bin the straws and just swig it down  :biggrin

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