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 Blazena Kaderabkova on April 28, 2011 at 10:57am
Thank you, I just ordered Idebenone from Kirkman US. With shipment is the price very high, but we have to try it. When arrive I thought give my son David Idebenone 3x daily, so 450mg a day. Its OK? David will be 8 at September.

Joshua's mom said:

Catena je Idebenon. Jedná se o doplněk - obrátil léky - značkou. Idebenon se prodává on-line. Tam jsou jiná místa na objednávku z Kirkman, ale je levnější než Smart výživu . Objednali jsme od Smart Výživa pak šel do Kirkman a tam byl žádný rozdíl. Joshua začala brát 150mg v dopoledních hodinách po dobu 6 měsíců, pak šel do 150 mg ráno a večer po dobu 6 měsíců. On váží 57 liber. Byli jsme poslali dopis z každého jeho specialisty volat jej "normální". To je velká v našem světě! Jeho dopisy byly zaslány také  Cochrane recenze jako mimo výzkum.

 

Catena vychází ze Švýcarska, Santhera Pharmaceuticals . Existuje mnoho dceřiných společností ačkoli. Jeden z Montrealu, Quebec nás volá každých 6 měsíců se dostat nejnovější informace o Joshua a dává aktuální informace o procesu přehled. Jediný problém s ní stává lék je cena. Právě teď jsme ho objednat a zaplatit cca. 450,00 dolarů za roky stojí za to. Co se stane léky, pokud je cena zůstává stejná, to bude stát nás, pokud si dobře pamatuji, blíže k $ 40,000.00 ročně, a to se vztahuje pouze 2 pojišťovny. 

 

Naomi

Permalink Reply by Leeandra Arhdeacon on April 28, 2011 at 11:34am
this is all GREAT news!! love that we can share this information and its positive!
Permalink Reply by Ofelia Marin on April 28, 2011 at 3:21pm
Dr. Finkel talked about the Idebenone trial on PPMD a few weeks ago. He mentioned that idebenone sold online might not have the same chemistry as Catena (Santhera's product), no one knows the exact chemistry in the ones sold online, so he warned about that.

Moein said:
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?
Permalink Reply by Ofelia Marin on April 28, 2011 at 3:31pm

Here are the recently published results from the 12 -month trial with Santhera's idebenone:

http://www.parentprojectmd.org/site/DocServer/Delphi_NMD_2011.pdf?d...

 

These results show some improvement in the respiratory function but not much else.

 

Permalink Reply by Joshua's mom on May 6, 2011 at 10:33pm

Catena and Idebenone may not have the same chemistry, but neither might Advil and Ibuprofen.  All medications start from some natural source.  We have seen a huge difference since starting Idebenone.  In his doctor's letters which we received after, they called him "normal".  Much like medication of any kind, not everyone gets the same effect.  Joshua also takes 10 supplements & deflazacort daily as well.

 

Blazena - Joshua is 8 and weighs 57lbs.  He started with 1 then went to 2.  In my personal opinion, supplements can have as much of an effect as medications so I'd start with 1 to get the body used to it, then work your way up slowly.  I do know of a girl with DMD who is 12 and weighs approx. 100lbs. She takes 3 per day.

 

Naomi

Permalink Reply by Ofelia Marin on May 8, 2011 at 6:55pm
Happy to hear that you noticed benefit. My hope is that Santhera's idebenone proves effective in the phase 3 clinical trial and is approved for DMD. So far the results are promising in terms of respiratory function. I definitely hope that the 12 month trial confirms these results and hopefully shows some skeletal muscle benefit.

Joshua's mom said:

Catena and Idebenone may not have the same chemistry, but neither might Advil and Ibuprofen.  All medications start from some natural source.  We have seen a huge difference since starting Idebenone.  In his doctor's letters which we received after, they called him "normal".  Much like medication of any kind, not everyone gets the same effect.  Joshua also takes 10 supplements & deflazacort daily as well.

 

Blazena - Joshua is 8 and weighs 57lbs.  He started with 1 then went to 2.  In my personal opinion, supplements can have as much of an effect as medications so I'd start with 1 to get the body used to it, then work your way up slowly.  I do know of a girl with DMD who is 12 and weighs approx. 100lbs. She takes 3 per day.

 

Naomi

Permalink Reply by Blazena Kaderabkova on May 9, 2011 at 3:13am
Did you noticed, Santhera removed the estimated date of end study from December 2012 to 2013.

Ofelia Marin said:
Happy to hear that you noticed benefit. My hope is that Santhera's idebenone proves effective in the phase 3 clinical trial and is approved for DMD. So far the results are promising in terms of respiratory function. I definitely hope that the 12 month trial confirms these results and hopefully shows some skeletal muscle benefit.

Joshua's mom said:

Catena and Idebenone may not have the same chemistry, but neither might Advil and Ibuprofen.  All medications start from some natural source.  We have seen a huge difference since starting Idebenone.  In his doctor's letters which we received after, they called him "normal".  Much like medication of any kind, not everyone gets the same effect.  Joshua also takes 10 supplements & deflazacort daily as well.

 

Blazena - Joshua is 8 and weighs 57lbs.  He started with 1 then went to 2.  In my personal opinion, supplements can have as much of an effect as medications so I'd start with 1 to get the body used to it, then work your way up slowly.  I do know of a girl with DMD who is 12 and weighs approx. 100lbs. She takes 3 per day.

 

Naomi

Permalink Reply by Blazena Kaderabkova on May 9, 2011 at 7:30am
Permalink Reply by Ofelia Marin on May 9, 2011 at 10:11am

As I mentioned above, the results show that Santhera's idebenone helps respiratory function.

 

http://www.reuters.com/article/2011/05/09/idUS36152+09-May-2011+HUG...

 

Liestal, Switzerland, May 9, 2011 - Santhera Pharmaceuticals (SIX: SANN) announced today that it will present first analyses of the 2-year open-label study (DELPHI-E) evaluating Catena® for the treatment of Duchenne Muscular Dystrophy. The findings indicate that Catena® can slow the decline in respiratory function associated with patients as they age. Data will be presented on May 9, 2011 in Lille, France at the 4th International Congress of Myology

Permalink Reply by Ofelia Marin on May 9, 2011 at 10:35am
I think it depends on the enrollment and during that presentation Dr. Finkel said that the enrollment is slow which is expected since they started enrolling non-steroid boys... So I expect a slow enrollment hence the study taking long time unfortunately.

Blazena Kaderabkova said:
Did you noticed, Santhera removed the estimated date of end study from December 2012 to 2013.

Ofelia Marin said:
Happy to hear that you noticed benefit. My hope is that Santhera's idebenone proves effective in the phase 3 clinical trial and is approved for DMD. So far the results are promising in terms of respiratory function. I definitely hope that the 12 month trial confirms these results and hopefully shows some skeletal muscle benefit.

Joshua's mom said:

Catena and Idebenone may not have the same chemistry, but neither might Advil and Ibuprofen.  All medications start from some natural source.  We have seen a huge difference since starting Idebenone.  In his doctor's letters which we received after, they called him "normal".  Much like medication of any kind, not everyone gets the same effect.  Joshua also takes 10 supplements & deflazacort daily as well.

 

Blazena - Joshua is 8 and weighs 57lbs.  He started with 1 then went to 2.  In my personal opinion, supplements can have as much of an effect as medications so I'd start with 1 to get the body used to it, then work your way up slowly.  I do know of a girl with DMD who is 12 and weighs approx. 100lbs. She takes 3 per day.

 

Naomi

Permalink Reply by Terry Porcaro on May 12, 2011 at 1:20pm
Naomi:  At what age did Joshua start taking Idebenone?  My grandsons are 5 and 6 1/2 years old.

Joshua's mom said:

Catena and Idebenone may not have the same chemistry, but neither might Advil and Ibuprofen.  All medications start from some natural source.  We have seen a huge difference since starting Idebenone.  In his doctor's letters which we received after, they called him "normal".  Much like medication of any kind, not everyone gets the same effect.  Joshua also takes 10 supplements & deflazacort daily as well.

 

Blazena - Joshua is 8 and weighs 57lbs.  He started with 1 then went to 2.  In my personal opinion, supplements can have as much of an effect as medications so I'd start with 1 to get the body used to it, then work your way up slowly.  I do know of a girl with DMD who is 12 and weighs approx. 100lbs. She takes 3 per day.

 

Naomi

Permalink Reply by Joshua's mom on May 12, 2011 at 3:47pm
Terry:   Joshua started taking Idebenone when he was 6 1/2.  He is now 8.

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