Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: mc_diab on September 06, 2012, 09:00:05 PM
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Hello,
My name is Marie-claire and i'm a mother for 3 children. My first son is thal minor, my second son is thal major and my little girl WAS thal major but now is doing great ,ThankGod, after a successfull BMT. I would like to share my experience with you and try to find a way to save Christopher.
By the way, this site is really great...
MC
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Welcome to thalpal,
It is nice to hear that your daughter was treated successfully with BMT. Do share the BMT success story with us. There is a lot of information on this site that can help you with managing Christopher's health.
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Hi mc_diab,
Welcome to Thalpal! And glad to hear that BMT of your daughter was successful. May God bless you and your family. :)
-P.
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Thanks Narendra and Pratik for yor welcome wishes,
I have a big concern about my son's health especially his ferritine. It's 2004 and he's on Exjade since he was 2 years old. He's almost 5 and the dosage is 750 mg but i think that Exjade is not that effective...what do you think??
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What's his weight?
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His weight is 21 Kg
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The dosage is correct. How long has he been on this dose? What is his ferritin level?
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Hi Andy,
His ferritine level is 2004 and he's been on Exjade since he was 2 years old. He's almost 5 now and i'm very concerned about his ferritine. Some patients told me that Exjade needs some time to start giving some good results but it's been almost 3 years...Does it take that much time????? i don't know!!!
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Does anyone knows anything new about Gene Therapy?? Hope that one day this procedure will be as simple as BMT is now...
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Exjade is working. His ferritin would be much higher if it wasn't. The dose is also correct. If you are not already splitting the dose into two and taking twice daily, I would suggest that adjustment, as it does give a better chelation effect because it assures true 24 hour chelation.
Gene therapy trials in the US are now recruiting patients. You can read more at http://www.thalassemiapatientsandfriends.com/index.php/topic,4545.msg43930.html#msg43930
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Thanks Andy for your reply,
You think if i split the dose and give him half in the morning and half in the evening it will give better results?? But the doctors were very clear about how we should take the medicine. Absolutly no food before and we have to wait minimum 30 mins before eating...
What do you think?
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Dose splitting has been pioneered by members of thalpal. The results have been all positive. Ferritin drops at an increased rate. Why? Exjade has a half life of 8 to 16 hours, so it cannot possibly give the 24 hour chelation that it claims. However, splitting the dose does guarantee a true 24 hour chelation period. Recently, we have found that more doctors are advising this method. I would do it regardless of whether the doctor is on board yet or not. What is important is your child and this will help. The new rules about Exjade also allow for it to be mixed with a variety of soft foods in addition to liquids. What is most important is 100% compliance with chelation, so whatever it takes is what is needed.
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mc_diab,
Welcome to thalpal, I am glad that your daughter is doing well after bmt and I hope that gene therapy will cure thal some day soon.
My 14 year old son has thal major. He uses exjade and his ferritin levels vary between 300 and 600. Much of the success we have experienced has been due to splitting his dose. The Children's Hospital in Oakland, possibly the best thalassemia center in the world suggested that we split his dose and we find doing so has decreased his iron levels significantly while reducing any side effects such as stomach ache.
We wish you the best and look forward to hearing about your daughter's bmt experience.
Sharmin
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Dear Sharmin,
Thanks for your reply and i'm glad that your son is doing well...I didn't know that splitting the dose can do so much effect. I will absolutly try it and hope that it will work with Christopher.
When we first knew about my son's disease, we were transfered to Chronic Care Center where they take care of patients with Thalassemia. We met there a dietetician who suggested to follow some diet poor in iron... Well do you think that this is necessary...Because that was really hard to explain to him why he shouldn't eat all that food especially burgers and hotdogs... That's why now i stopped following that diet.
What do you think? What kind of food is your son eating?
Thanks
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Dear Andy,
I'm really glad that i met you and thank you for all these details that i didn't know about.
God bless you all
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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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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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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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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.... :yes
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Hey guys.... where is everybody???? Andy, Pratik, Sharmin???
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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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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.... :yes
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.