Please advise

Hi all,

I need a bit of help. My daughter Eva has 4-weekly transfusions & we live in melbourne. She is 3 years old and weighs about 16Kg. She takes a 250mg exjade tablet dissolved in water every day and is very compliant. Shes been on it for about 7-8 months now but we just havent seen a difference. In fact, her iron levels are just going up, currently sitting at 2400. For the past month, at least once a day she complains of tummy pain which she has associated with doing a poo but the pain distresses her. My questions to you experts are:

1. Could the tummy ache be coming from the exjade (which shes been on for 8 months & never had this problem) or could it be from the excess iron thats building up?

2. Is she on the correct dose?

3. Should I try splitting the dose? Currently she has one tablet in 100mL of water. If I split the dose, Should I give her 125mg in 50mL or 100mL of water?

Hope you guys can help.

Thanks & Kind Regards,

Sameet

Hi Sameet,

My daughter is also on exjade. I think your daughter's exjade dose is lower than it should be....she is currently taking ~15mg/Kg of her weight. she probably needs 20mg/Kg or 25mg/Kg dosage to see a drop in Ferritin. For tummy aches, it is possible that exjade is culprit. iron overload is not enough at this early age to create issues in my opinion.

My daughter used to complain about tummy ache. For a month, we had put her on Zantac (75mg) on a regular basis as per her Hemo's advice. We also tried splitting the dose. In addition, we make sure she is eating in every few hours. Empty stomach just makes the tummy aches worse. Also, do not give Exjade in empty stomach. Try these things.... If these do not help, then you may want to do some thorough check up to figure out the cause of tummy ache.

Years of use has shown that Exjade does not need to be taken on an empty stomach and that it can be mixed with a variety of foods. Split dose also means the patient has to deal with less of the drug at once. Bostonian has been one of those who have pioneered these new and better methods for taking Exjade, and the experience is that the side effects of Exjade can be greatly reduced by changing how it is administered. Another nice effect is that liver scores are more manageable with the split dose.

Splitting the dose was actually Andy's suggestion when the tummy aches started (way before any doc suggested it to us) which we adopted and saw the benefit. You could have patented that Andy 

I too can vouch for split dose. My daughter's Ferritin came down from 1750 to 1050 in 6 months time post starting split dose. I also give slightly higher dose of Desirox (same as Exjade manufactured by Cipla) to my daughter, more than recommended level of 40Mg/Kg coz the dose is split and to see if it makes some impact. Her ferritin has remained same (~ 1100) in the last 6 months. I think the overall dose can be increased if the dose is being split and it would give better results. What say guys??

Regards,