Discussion Forums > Thalassemia Major
Question for Andy...
Andy Battaglia:
Hi Syaida,
Exjade is much easier to administer than desferal, so it has become the drug of preference these days. Its actions are fairly equivalent to desferal and it requires no needles, so most doctors are now leaning towards Exjade for early use. I'm not sure I would want to go through the hassle of trying a needle on a young boy. When he does start Exjade, whether now or later, start with a low dose and build up to the required dosage, as his body gets used to the drug. This will eliminate most of the early side effects, like the rash. Get him used to drinking tea also, as this helps inhibit iron absorption and is a natural chelator.
Which chelator is best? Every company will argue for their drug, but studies have shown that Ferrirprox (L1, deferiprone, Kelfer) is best at removing heart iron and also offers a cardio-protective benefit, that the other chelators do not. Why is this most important? Because heart failure is the number one cause of death in thalassemics. In addition, after over 20 years of use, no further side effects for L1 have been found. The drop in white cells in some patients is long established as the main detrimental side effect of L1. Joint pain is the other side effect most often mentioned. Compared to the other chelators, L1 is the superior drug. I would also be a bit reluctant to start a young child on L1, but by age 6, it should be considered, depending on how well the boy is doing with his current chelation regimen.
I also want to mention for all, that most doctors agree that patients should not rely on only one chelator during their lifetime, as switching chelators can help to minimize any long term effects.
Syaida Lee:
Thanks, Andy I'll bear in mind what you said. First and foremost, you cannot imagine how happy when I stumble upon this network. My caregiver and I are now on this everyday and taking down notes.
I do not know how/where to begin on what me & Adel had gone through these 3 years. This lil guy is indeed very special. His pregnancy was very dramatic, he had plueral effusion on his left lung at 16 weeks. I went through procedure to "tap" his lungs in in utero. On further investigations, at 19 weeks he was found to be B-Thal Major with a big VSD (hole in the heart). He had had 3 heart surgeries (at birth) and thereafter was very sick including jaundiced. He was termed chronic lung disease and has been on O2 ever since his heart surgeries. Blood transfusion started soon after heart surgeries too. We noticed his spleen & liver were rather big at about 3-6 months old. We opted for a splenic embolisation before his 2nd birthday cos he started become sickly and his transfusion frequency was like weekly due to splenomegaly. Thereafter, he was well (started walking, feeding making huge milestones) for the next 9 months, was transfused between 6-4 weekly and the transfusion frequency became 3 weekly last Dec. We gave him a 2nd embolisation this year January. He has been on 4-5 weekly transfusion since.
I know it's very hard to do the needle on a young boy, but this boy has tremendous understanding, it may be difficult for other kids as they are restrained from their movements, but lil guy is quite used to being confined within limited area, reading, writing, playing his puzzle are his favourite pastime. He was even on a 24 hr feeding pump (via gastrostomy) before his embolisation, as his liver & spleen became so big abdomen became distented, we couldn't keep any milk down. We got rid of that pump after he became well after his 2nd birthday. I guess if we can't cope with desferal, we'll switch to ExJade. I'm not sure if you've heard of Ambrotose, Adel has been on it for 1 year I feel it really helps as a natural chelator.
Andy Battaglia:
Desferal may be a better choice. The prior problems with the liver and spleen lead me to think that desferal may be better tolerated at this point. If liver function is currently affected by enlargement, it might be wiser to wait on starting Exjade. The other problems he faces complicate matters, as you don't know what to expect when new drugs are introduced, and desferal is probably the safest chelator to start. With chronic lung disease, I would suggest always watching for any breathing reactions from any new drugs that are introduced, and desferal is known to cause allergic reactions in a small percentage of patients, so watch for any sign of allergic reaction.
A good buddy of mine, who I met through this group, takes products from the same company that makes Ambrotose, and he feels he has done quite well in terms of health and energy. There are many natural products that can help the health in general, which is very beneficial for anyone already dealing with health issues. I would definitely suggest natural vitamin E for your son. Its long term use will prove quite beneficial for heart and lungs.
Manal:
Hello Syaida Lee and welcome to the site :biggrin
I am happy that you were able to pass through all these hardships that faced Adel and you and i hope he can cope with desferal with no problems. Hats off ....you are doing a wonderful job. Keep us updated
manal
ankita:
what is green tea ??? ???
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