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Idebenone

My sons doc recommended he take 200mg of Idebenone, i am having a really hard time frinding it. Where do you guys order it from? Also Green tea extract 150mg?

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Permalink Reply by Moein on April 21, 2011 at 2:48am

I know where you can get Green Tea Extract,but not Idebenone.

Green tea you can get at GNC ,Walgreens,Walmart.......

If you knew where you can get Idebenone,please let me know

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Permalink Reply by Ginny Ward on April 21, 2011 at 9:34am

http://www.santhera.com/index.php?docid=470&vid=&lang=en#470 has information on availability of Idebenone.

Green tea extract is widely available. It is however very important that you check the reputation of the manufacturer. Unfortunately supplements in the US are regulated as food and not pharmaceuticals. Therefore there is no way to be sure what is on the bottle is in the bottle, the quality of the manufacturing process or its cleanliness, that each capsule indeed contains the amount of the product that the bottle says it does.

So the reputation of the manufacturer is very important. GNC and other supplement stores cannot be relied upon to be knowledgeable about the products or their quality. A pharmacist may be your best bet for recommending a brand.

Ginny

John age 20

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Permalink Reply by Leeandra Arhdeacon on April 21, 2011 at 10:40am

Thank you Ginny! that is very helpful!

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Permalink Reply by Marks33 on April 25, 2011 at 7:08am

Hi there,

I'd be interested to know the basis for your doctor recommending this and whether it is actually available in the US. I understood that there is currently recruitment underway for a Phase III trial for Idenebone/Catena.

http://clinicaltrials.gov/ct2/show/NCT01027884?term=catena&rank=1

best wishes,

Mark

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Permalink Reply by Ofelia Marin on April 25, 2011 at 9:14pm

I thought you live in Canada? Idebenone is approved there for FA.

Moein said:

I know where you can get Green Tea Extract,but not Idebenone.

Green tea you can get at GNC ,Walgreens,Walmart.......

If you knew where you can get Idebenone,please let me know

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Permalink Reply by Jitka Reineltová on April 26, 2011 at 12:12am

Hi, try to look at the pages of Kirkman (www.kirkmanlabs.com/), I think there Idenebone sold.

Jitka

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Permalink Reply by Leeandra Arhdeacon on April 26, 2011 at 12:57am

Yes it is available in the US

Marks33 said:

Hi there,

I'd be interested to know the basis for your doctor recommending this and whether it is actually available in the US. I understood that there is currently recruitment underway for a Phase III trial for Idenebone/Catena.

http://clinicaltrials.gov/ct2/show/NCT01027884?term=catena&rank=1

best wishes,

Mark

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Permalink Reply by Moein on April 26, 2011 at 1:02am

Has anybody tried Idebenone and got a positive effect?We hear just studies without real results

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Permalink Reply by Joshua's mom on April 27, 2011 at 10:45pm

Idebenone (Catena) is FDA approved in Canada, but it is only approved for Fredrich"s Ataxia. Joshua is 8 years old and has been taking Idebenone for a little more than 18 months now. We order it from Kirkman the US. Before Joshua started, he did a 6 minute walk test. He walked 222 meters. After 6 months on Idebenone, he walked 397 meters. After 1 year on Idebenone, he walked 544 meters. There have been absolutely no negative side effects we have seen. I hope this helps.

Here is the link as to where Idebenone is recruiting. Idebenone Clinical Trial

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Permalink Reply by Moein on April 27, 2011 at 11:37pm

Thank you very much for being informative,Joshua's mom.That is great.Actually,I live in Canada,but dr didn't mention anything about Catena.One more thing,is catena the same as Idebenone which is sold online?

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Permalink Reply by Blazena Kaderabkova on April 28, 2011 at 2:37am

Thats great to hear it. How many miligrams daily does Joshua take?

Joshua's mom said:

Idebenone (Catena) is FDA approved in Canada, but it is only approved for Fredrich"s Ataxia. Joshua is 8 years old and has been taking Idebenone for a little more than 18 months now. We order it from Kirkman the US. Before Joshua started, he did a 6 minute walk test. He walked 222 meters. After 6 months on Idebenone, he walked 397 meters. After 1 year on Idebenone, he walked 544 meters. There have been absolutely no negative side effects we have seen. I hope this helps.

Here is the link as to where Idebenone is recruiting. Idebenone Clinical Trial

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Permalink Reply by Joshua's mom on April 28, 2011 at 10:47am

Catena is Idebenone. It is the supplement - turned medication - brand name. Idebenone is sold on-line. There are other places to order from but Kirkman is less expensive than Smart Nutrition. We ordered from Smart Nutrition then went to Kirkman and there was no difference. Joshua started taking 150mg in the morning for 6 months then went to 150mg in the morning and night after 6 months. He weighs 57lbs. We were sent a letter from each of his specialists calling him "normal". That's big in our world! His letters were also sent to Cochrane Reviews as outside research.

Catena is based out of Switzerland, Santhera Pharmaceuticals. There are many subsidiaries though. The one out of Montreal, Quebec calls us every 6 months to get updates on Joshua and gives updates on the trial overview. The only problem with it becoming a medication is the price. Right now we order it and pay approx. $450.00 for a years worth. Once it becomes a medication, if the price stays the same, it will cost us, if I remember correctly, closer to $40,000.00 per year and it is only covered by 2 insurance companies.

Naomi