Discussion Forums > Thalassemia Major

The Goal For Thalassemia Patients Today...

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Dharmesh:

--- Quote from: kanika on October 11, 2013, 01:46:24 PM ---hey sharmin,

would u plz elaborate on the split dose-am pm. does that mean dividing the total prescribed intake of medicine into two times a day??
as for me, currently i have been taking 1800 mg of exjade as per my bodyweight which is 52 kgs. and my ferritin level has quite recently dropped to 600.. wat would be the ideal thing to do?? should i consider reducing the dose or after it drops to 200-300??

--- End quote ---
Hello Kanika,
Split dosage can be taken with a gape of 12 hours e.g. 8AM-8PM. It means half dosage in the morning and half dosage in the evening.

Your ferritin level is good.

Have u had ur T2*MRI? It shows true picture of Iron stored in the body and help in setting correct dosage.

aus:
I just have a question regarding how low the Hb should be before transfusion. Over here in Perth, Australia, they would now transfuse my son if he is 10. He's pre transfusion Hb count is usually between 7.8-8.8. I feel that he really suffers when his Hb count drops to 8.0. He gets his transfusion every four weeks, on 375mg exjade and ferritin level is around 1300. My son plays badminton seriously. He can only join tournaments based on his transfusion date. The latest he could play properly (although I feel there is already danger in it) in a tournament was at 3rd week of transfusion. He did come 2nd on local junior tournament for singles, and first for doubles. In singles he loss to his doubles partner. His friend knew he was already low on blood and couldn't push it any further. Even his coach asked if we could bring the transfusion date forward, but we all know there is no such chance. I wasn't at the tournament, but my husband said that he thought my son had stopped breathing momentarily during the finals of the singles match. Is it advisable to let him continue with the sport?

Andy Battaglia:
Pre-transfusion Hb should be 9.5-10. If he is kept above that level, he shouldn't have problems with the sport.

Katerina_Mall:
i would like to ask what is IP6? i m from Greece and i have not heard of this, can we take this (thal major)? and if yes is there a link where i can buy it from online? what exactly does it do?

Bostonian_04:
Hello Aus,

Can't your son have transfusion every 3 weeks to maintain a Hb of 9.5 and above? Here is US, many hospitals prefer every 3rd week transfusion to make sure Hgb remains above 9.5.

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