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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55318 Posts in 5912 Topics by 6215 Members
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This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Pratik
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« Reply #15 on: September 11, 2012, 01:58:13 PM »

Docs say what they gonna say.

I am also not advised to eat apples as they contain iron, but I love them and just cannot avoid them. I eat around 3-4 apples a day.

These foods contain (especially apple and other fruits) very low and natural amount of iron. So it's fine if your child eats burgers or all those food but make sure it doesn't turn to a daily routine (except for fruits like apple, as I consume them daily in nice amount as well) as those may contain about 10-20 units of iron and adding that amount daily to total ferritin levels is dangerous, as you know.

Personally, I never chose not to eat any food by the thought of iron.

-P.
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mc_diab
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« Reply #16 on: September 11, 2012, 03:13:23 PM »


Thanks Pratik for your reply and my opinion is food iron will not make much difference.
He's 5 and i think he has to eat everything...



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Andy Battaglia
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« Reply #17 on: September 11, 2012, 06:00:33 PM »

According to the Standards of Care Guidelines, transfusing thals should not worry much about iron from foods. Veg foods should never be avoided by transfusing patients. The iron is not high and is also poorly absorbed. The only food that is of much concern is red meat and should be eaten in moderation at most, as its iron is most easily absorbed. Your body does need iron from foods to function, so it should never be completely avoided, as the iron stores are of little use for day-to-day bodily functions.

And as Sharmin mentioned, follow the advice of Oakland. That is where the Standards are written. I am delighted to hear that Oakland is advising dose splitting. The goal is chelation 24/7 and its importance is well recognized. Once a day use of Exjade cannot provide 24 hours of chelation. I feel that Novartis has overemphasized the importance of once a day chelation, as it is a more effective marketing technique, even if twice a day gives better results. The goal was once a day and they seem hesitant to alter their marketing strategy, although I do believe they would find it advantageous to the health of patients to take a smaller dose, but more often. It does seem to cause less side effects when taken this way. and patients usually see improvement in their liver function tests, also.
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Andy

All we are saying is give thals a chance.
mc_diab
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« Reply #18 on: September 16, 2012, 01:19:33 PM »

Hi Andy, Hi Sharmin,

I hope all is well with you.......
Can either of you please recommend how I can split the dose of 750mg Exjade for Chris?
Should it be split in half or is there a different way?
Also, can you please comment on the need of taking Exjade on an empty stomach, especially for a second dose later in the day?
I was also wondering if you would have insight on why Chris' blood sometimes last only a couple of weeks between transfusions but sometimes it lasts longer? He is VERY active and the Doc says that could be a reason!!!!
Sorry for so many questions........
Sharmin you had asked me to share some details of Maria's BMT.....I promise to get it done by tomorrow....
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mc_diab
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« Reply #19 on: September 27, 2012, 07:46:49 AM »

Hey guys.... where is everybody?Huh? Andy, Pratik, Sharmin???
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Andy Battaglia
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« Reply #20 on: September 27, 2012, 10:28:39 AM »

Hi mc_diab,

The dose of 750 is fine for his weight. Dose spliting is easy. Just take one dose in the morning as he has been taking and a second dose later in the day (half an hour before dinner is fine).
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Andy

All we are saying is give thals a chance.
Pratik
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« Reply #21 on: September 27, 2012, 12:30:52 PM »

Hi Andy, Hi Sharmin,

I hope all is well with you.......
Can either of you please recommend how I can split the dose of 750mg Exjade for Chris?
Should it be split in half or is there a different way?
Also, can you please comment on the need of taking Exjade on an empty stomach, especially for a second dose later in the day?
I was also wondering if you would have insight on why Chris' blood sometimes last only a couple of weeks between transfusions but sometimes it lasts longer? He is VERY active and the Doc says that could be a reason!!!!
Sorry for so many questions........
Sharmin you had asked me to share some details of Maria's BMT.....I promise to get it done by tomorrow....
Sorry, I didn't had my eye on this thread or didn't recognized your reply.

Asunra are available in various sizes/mgs like 100, 200 and perhaps 125 somewhere as well (I think so).

Or you can take two 400 ones and cut around 1/4th from either of two tablets so that will make it almost equal to 750 or so.

Regarding taking second dose with full or empty stomach, I have myself recently took it a lot of times with food and didn't felt like it wasn't working or so, instead I think it doesn't affect either way. Many fellow mates here on Thalpal due to their children being small and may not understand, gives them with food since couple of years and it works well, so don't worry about the stomach being empty or not.

When HB reaches lower boundary, it may decrease rapidly, so it maybe the reason, but nothing to worry about. Sometimes, coincidentally he may also be catching a little flue or mild virus or such which may aid in reducing Hb rapidly.

-P.
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