starting Exjade

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #90 on: October 14, 2014, 02:20:17 PM »
Milk thistle is one of the mildest herbs. Many products have the same statement, "do not give to people under 18" because they have never been officially tested on younger people. It has nothing to do with their safety. I wouldn't hesitate to use milk thistle anymore than I would hesitate to eat an apple. I will also add that I wish the founder of this group had listened to her mother and taken milk thistle, rather than listen to the misplaced warnings of doctors who convinced her not to use the herb. The doctors who warn about milk thistle do so based on a test tube study that showed milk thistle might affect dosing. This study has never been duplicated in living beings, once again proving the uselessness of test tube experiments. You've already seen the positive results. If anything, milk thistle will improve liver health, allowing the chelator to do its job.
Andy

All we are saying is give thals a chance.

Re: starting Exjade
« Reply #91 on: October 14, 2014, 02:33:18 PM »
Thanks Andy thats gives me a big relief, sorry I have bothered you with my questions and lot of misplaced statements, I will continue with Milk Thistile and do post you about the next week results..

Thanks again for your kind information.

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #92 on: October 15, 2014, 02:16:43 PM »
Atin,

I am happy to share the info. Sometimes doctors need to dig a little deeper and they don't. The concerns about milk thistle are some of the silliest I have ever heard. It is one of the safest herbs there is.
Andy

All we are saying is give thals a chance.

Re: starting Exjade
« Reply #93 on: November 04, 2014, 02:29:31 PM »
HI All,

Thanks for your support and comments.

Unfortunately Exjade didn't work for my daughter and its been stopped today. Her LFT results we not good and gone up high.

As suggested I used Milk Thistile, kept her hydrated and splitted the dose as well but things were no in favour.

When we started Milk thistle the LFT gone down and it came upto ALT 75 and AST 56 mark but later it started rising and gone upto ALT 189 and AST 126.
This week today ALT is 275 and AST 139, so doctor suggested to stop Exjade and put her on desferal.

Thanks again and I will keep posted, WIsh all for a healthly life.

starting Exjade
« Reply #94 on: March 04, 2015, 11:47:48 PM »
Hi everyone,
My friend's son is 6 years old and lives in Vietnam, his weight is 44lbs, and his ferritin is about 1040. He has a blood transfusion every other 2 months and the transfusion amount is 200ml to 250ml. He is starting to take Exjade 250MG now.  My question is what should the dosage be ?  How many pills per day ?   It is very hard to find the proper information in Vietnam.  Any help or advise will be greatly appreciated.
Also if anyone knows of any programs that might be available to help with the cost of  Exjade  here in the states or in other countries that would also be very helpful.

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #95 on: March 05, 2015, 05:25:47 AM »
The recommended dosage of Exjade is 30 mg/kg per day. For his weight, that comes to 1320 mg daily, but it doesn't have to be so exact. Because he only transfuses every two months, he won't accumulate iron at the same rate as most thal majors, so a lower dose of 20-25 mg/day may be enough, as long as his transfusion frequency doesn't increase. When the drug is first started, it is best to start with a low dose for two weeks, to minimize the initial side effects, especially the rash. 1/3 to 1/2 dose at first. In addition to liquids, Exjade tabs can be crushed and mixed with soft foods to make it easier to take.

Novartis does have a program in the US to help patients pay for the drug if insurance doesn't, but that is for US patients. I do not know if they have a program for Asian patients. The only information I can find for the Novartis office in Vietnam is
NOVARTIS PHARMA SERVICES AG - REPRESENTATIVE OFFICE IN HO CHI MINH
Company Information
72-74 Nguyen Thi Minh Khai Street,
Ho Chi Minh, Ho Chi Minh City, Vietnam
+84-838239090
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: starting Exjade
« Reply #96 on: March 05, 2015, 07:45:41 AM »
Hello,
@Andy, the said weight is 44 lbs which comes to 19.95 kgs i.e. 20kg aprox
So, the initial starting dosage should be 20kg*20mg= 400mgs
@ lyhoang,
follow the rest advice said by Andy.
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: starting Exjade
« Reply #97 on: March 06, 2015, 05:15:17 PM »
Thanks Dharmesh. Too much trying to get caught up late at night.
Andy

All we are saying is give thals a chance.

Re: starting Exjade
« Reply #98 on: March 07, 2015, 01:40:53 AM »
Thank you so much for the information Andy, Dharmesh! I really appreciated for your respond. It costs my friend $850 per month for the exjade which is a lot of money in Vietnam. I will tell her to contact the company in Ho Chi Minh to see if they can help with her case.

Best Regards,
Lyhoang

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Offline jay

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Re: starting Exjade
« Reply #99 on: March 07, 2015, 09:24:53 AM »
Hi Lyhoang, you are a very good person you are helping your friend.
There is one pharmaceutical manufacturer from India who sells the same drug for far less price.
I will give you every information and every authorized help to get it there, but in return please give me the one information, what is the average salary of an English convent school teacher? What is the average salary of a medical doctor in the state run Hospital?
You give me this information and I will give you every help we need to help each other.

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Offline Dharmesh

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Re: starting Exjade
« Reply #100 on: March 08, 2015, 01:50:10 PM »
Thanks Dharmesh. Too much trying to get caught up late at night.
Dear 100 Andybots, Pay sufficient attention to ur health. It is valuable to us
Start listening your body, it always gives signs

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Offline Lokkhi maa

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Re: starting Exjade
« Reply #101 on: April 01, 2015, 05:20:53 AM »

Dear all,

My 18 months old baby already taken 9 transfusions.Now I want to know her ferrittin level.Last month I have test her Serum iron and TIBC but not serum ferritin. Which result was TIBC 49.00 mcmol/dl and serum iron 25.00 mcmol/dl.Please advice which test I will do now for checking her iron level...

Best Regards,
Lokkhi Maa

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Offline Bostonian_04

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Re: starting Exjade
« Reply #102 on: April 01, 2015, 06:55:21 PM »
Hello Lokkhi Maa,

for ferritin, do the serum ferritin test. It is a simple blood test. we do it every month before blood transfusion and look at the average to get an idea. it fluctuates a lot with fever, cold etc.
Quis custodiet ipsos custodes ? - Plato

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Offline Lokkhi maa

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Re: starting Exjade
« Reply #103 on: April 02, 2015, 02:30:19 AM »

Thanks dear Bostonian_04 :)
Lokkhi Maa

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Offline Lokkhi maa

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Re: starting Exjade
« Reply #104 on: November 03, 2020, 06:30:25 AM »
Hello Andy,

After long time, how r you?

Now my child is 7 yrs old and taking monthly regular transfusion.

After 15 days of transfusion her HB comes 10 and serum ferritin is only 484 ng/ml.

She taking daily 500 mg Asunra.

Why serum ferritin level is low as she takes transfusion regularly! Earlier it was 1000ng/ml..

Now I reduce her dose?

Please advice.. :heartred
« Last Edit: November 05, 2020, 03:29:47 PM by Lokkhi maa »
Lokkhi Maa

 

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