I am looking for a place to buy idebenone. I do not believe it's available in the US yet, but my sons doctor said I could try the internet. I have done that, but want to be sure I buy the supplement from a good, reputable source. Any suggestions?

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(European Heart Journal, 2008) Long-term blinded placebo-controlled study of SNT-MC17/idebenone in the dystrophin deficient mdx mouse: cardiac protection and improved exercise performance

Gunnar M. Buyse1,*, Gerry Van der Mieren2, Michael Erb3, Jan D’hooge4, Paul Herijgers2, Erik Verbeken5, Alejandro Jara6, An Van Den Bergh2, Luc Mertens7, Isabelle Courdier-Fruh3, Patrizia Barzaghi3 and Thomas Meier3 - Belgium

Aims: Duchenne muscular dystrophy (DMD) is a severe and still incurable disease, with heart failure as a leading cause of death. The identification of a disease-modifying therapy may require early-initiated and long-term administration, but such type of therapeutic trial is not evident in humans. We have performed such a trial of SNT-MC17/idebenone in the mdx mouse model of DMD, based on the drug’s potential to improve mitochondrial respiratory chain function and reduce oxidative stress. Methods and results: In this study, 200 mg/kg body weight of either SNT-MC17/idebenone or placebo was given from age 4 weeks until 10 months in mdx and wild-type mice. All evaluators were blinded to mouse type and treatment groups. Idebenone treatment significantly corrected cardiac diastolic dysfunction and prevented mortality from cardiac pump failure induced by dobutamine stress testing in vivo, significantly reduced cardiac inflammation and fibrosis, and significantly improved voluntary running performance in mdx mice. Conclusion: We have identified a novel potential therapeutic strategy for human DMD, as SNT-MC17/idebenone was cardioprotective and improved exercise performance in the dystrophin-deficient mdx mouse. Our data also illustrate that the mdx mouse provides unique opportunities for long-term controlled prehuman therapeutic studies.
If we buy Idebenone from these websites listed here, is it same as the one that is being used in the Phase II clinical trials for DMD? I mean, myy understanding is that the one available is low dose and they modified it for DMD?...am I correct? We are visiting Dr wong next week and would like to ask her about starting this for my son instead of COQ10. Trying to gather as much info as possible. Thanks for posting your experience with idebenone.

-bain

Hi everybody,

I think that Idebenone is worth the try.It is really good and very positive effects are expected to see soon.I was thinking that the positive effects  Joshua mom was talking about are biased,but I found that she is truthful in her notices.I am not sure if every body react the same,but again it gives at least more energy.

We receive phone calls every 6 months from Catena regarding Joshua's reaction to Idebenone.  I had told them which sites we order from and they had said they are reputable companies.  They are: Kirkman & Smart Nutrition.  If you do have questions for Catena, you are always welcome to call and ask them.  Santhera

Hi There Joshuas Mom!  I have a few questions regarding idebenone.  Are Joshua's doctors recommending this supplement?  How much idebenone are you supposed to administer?  If it is per body wieght, please give me the parameters. Finally, are you seeing any changes in Joshua since he has taken this supplement?  Thanks for your time in answering my questions. I have a 26 year old son with DMD. Still and will always search for anything that may help my son. 

Heidi Miller

Hi Heidi,

 

Joshua's neuro was who recommended Idebenone in Catena form.  Catena is a medication here in Canada, but only approved for Fredrich's Ataxia.  When speaking with Catena, they had said it is Idebenone and recommended ordering it from Smart Nutrition or Kirkman.  We order it from Kirkman because of the price difference.  Joshua is 8 and weighs approx. 65lbs.  He takes 1 capsule twice per day.  The parameters I don't know specifically.  His neuro moved to Sacramento last year so you should be able to talk to him.  His name is Dr. Skalsky

 

There have been dramatic changes since he started Idebenone.  Before he started he did the 6 minute walk test.  He walked 262 metres.  After 6 months on one per day; 397 metres.  After 1 year of 1 capsule twice per day; 522 metres.  His academics went up, he didn't use the lift on the school bus anymore, and he stopped using the Gower's.  At our last appointment they considered him 'normal' but does have a slight tightening of the achilles tendons.

 

After we started, there was another boy/man who is 18 and started taking it as well.  He was able to not use his chair full time and move when he was sitting much easier without any help.

 

Dr. Skalsky is a Duchenne advocate for a specialist.  He knows more than any Dr. we've had in his field.  You'll notice the link and he is always willing to answer questions.  He still keeps in contact with us as well.  I hope this helps.  If you have any other questions, you are more than welcome to ask.  To ask more directly, you can find me on Facebook as well under Naomi-Clark Desender.

 

Take care,

Naomi

I am one of those who recommend Idebenone.It is really helpful,moreover,it improves cognitive issues

Hi Naomi,


Thanks for the information. Could you please tell me the amount of idebenone in each capsule? I also need to know what form the idebenone comes in. Is it a pill that can b crushed?  If it is a capsule, can it b taken apart to get to the med easily?  Mitch has a PEG tube. He does not eat or drink by mouth.. All meds, etc are administered through a tube in his stomach. Thanks again for your help. Take care.


Heidi

 

Joshua's mom said:

Hi Heidi,

 

Joshua's neuro was who recommended Idebenone in Catena form.  Catena is a medication here in Canada, but only approved for Fredrich's Ataxia.  When speaking with Catena, they had said it is Idebenone and recommended ordering it from Smart Nutrition or Kirkman.  We order it from Kirkman because of the price difference.  Joshua is 8 and weighs approx. 65lbs.  He takes 1 capsule twice per day.  The parameters I don't know specifically.  His neuro moved to Sacramento last year so you should be able to talk to him.  His name is Dr. Skalsky

 

There have been dramatic changes since he started Idebenone.  Before he started he did the 6 minute walk test.  He walked 262 metres.  After 6 months on one per day; 397 metres.  After 1 year of 1 capsule twice per day; 522 metres.  His academics went up, he didn't use the lift on the school bus anymore, and he stopped using the Gower's.  At our last appointment they considered him 'normal' but does have a slight tightening of the achilles tendons.

 

After we started, there was another boy/man who is 18 and started taking it as well.  He was able to not use his chair full time and move when he was sitting much easier without any help.

 

Dr. Skalsky is a Duchenne advocate for a specialist.  He knows more than any Dr. we've had in his field.  You'll notice the link and he is always willing to answer questions.  He still keeps in contact with us as well.  I hope this helps.  If you have any other questions, you are more than welcome to ask.  To ask more directly, you can find me on Facebook as well under Naomi-Clark Desender.

 

Take care,

Naomi

Hi Heidi,

 

Each capsule is 150mg.  They are capsules so you can take them apart easily like most.

 

Take care,

Naomi

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