It seems that Idebenone is not available online!I don't know if this news considered good or bad!

Good if it will be approved,bad that we can't buy it!

Any new ideas,please?!

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Naomi where can I buy the capsules?

Joshua's mom said:

I just spoke with Smart Powders and the FDA is giving them grief any time they want to sell idebenone in capsules because they are in business with the pharmaceutical companies (Santhera) for it.  They will start selling the powder to fill the capsules again tomorrow though.  1/4 tsp = 450g.  We ordered capsules so we can fill them.  The only reason they are selling it in powder form is because then it is considered a "beauty product" and can be used topically.

Ofelia, from your conversation, do you trust Kirkman´s Idebenone or would you order maybe Smart Powder?

Ofelia Marin said:

I just called Kirkman. Idebenone is no longer sold online b/c it is no longer Utra-tested (I was told that it would jam the testing machine; I was also told that they 'know' that there cannot be a problem with it hence they decided not to test it anymore). It can only be ordered by phone.

Also, Starthera's Idebenone is nowhere close to approval in the US. The clinical trial is not fully enrolled and the enrollment is very slow, they cannot find too many subjects satisfying the criteria willing to participate.

Is Smart Powder's ultra-tested? If not, then they are both the same. Kirkman did not change it, just doesn't ultra-test it anymore. Who can say for sure? :(

JUAN PEDRO ARBULU said:

Ofelia, from your conversation, do you trust Kirkman´s Idebenone or would you order maybe Smart Powder?

Ofelia Marin said:

I just called Kirkman. Idebenone is no longer sold online b/c it is no longer Utra-tested (I was told that it would jam the testing machine; I was also told that they 'know' that there cannot be a problem with it hence they decided not to test it anymore). It can only be ordered by phone.

Also, Starthera's Idebenone is nowhere close to approval in the US. The clinical trial is not fully enrolled and the enrollment is very slow, they cannot find too many subjects satisfying the criteria willing to participate.

You can purchase the empty gel capsules from virtually any nutrition store.  I will give you a few links to view. 

Vitacost, iherb, Herb Affair, Herbal Remedies, Vitamin Shoppe

 This link will tell you the size chart you need for the dosage given.

great thanks!

Joshua's mom said:

You can purchase the empty gel capsules from virtually any nutrition store.  I will give you a few links to view. 

Vitacost, iherb, Herb Affair, Herbal Remedies, Vitamin Shoppe

 This link will tell you the size chart you need for the dosage given.

As I see I'm not the only one! Just been on Smart Powder to reorder and did not come up. So I came here to see and my heart skipped a beat when I saw it seemed to have gone altogether! Thankfully I saw some posts saying the powder form will be available again?  People could be right when they say it could be because it is about to become medication, just had a quick look on the internet, and trials with idebenone have been ongoing for lots of other conditions, and one of them said that the EMA (european equivalent of FDA i believe) was close to approve it to be marketed as medication.  Step in the right direction? At least, it seems we've all been doing something right by taking a leap of faith with it since it seems to be attract so much interest for other things! 

Seems to me that the exclusion criteria for the Idebenione trial is so tight - I can't see how they'll recruit the number of cohorts needed.

Exactly! That is way they postponed the end date to Dec 2013, one year delay...

lisa burke said:

Seems to me that the exclusion criteria for the Idebenione trial is so tight - I can't see how they'll recruit the number of cohorts needed.

Hello,

My son was recently diagnosed. I am looking for anything that may help. Can you share your experiences with Idebenione with me? Did any of your Doctors help with the dosage?

I would also be very interested in finding out the benefits of Idebenone. This is the first i've heard of it. Do you take it with steroids? What kind of dosage? Anyone in the DMD community advise against taking it? Thanks for any information.

Denise Bretsik said:

Hello,

My son was recently diagnosed. I am looking for anything that may help. Can you share your experiences with Idebenione with me? Did any of your Doctors help with the dosage?

If you search Idebenone on the site, it will bring up a lot of discussions!  Joshua has been on it for the past, almost 3 years.  He is 9 years old, 65lbs (but not overweight), and also on deflazacort.  His neurogeneticist was the one who recommended it just as it came into phase II of the clinical trials.  I will add the links I have for it below.  The dosage was recommended to be up to 950mg per day, but to wean up like you would a medication.  I has made big a big difference!  We would increase it without telling the physiotherapist, just to see if she could see the difference, and within a week of the increase, she would call us.  His legs don't harden like they did before, he had the start of scoliosis - which has disappeared, and his respiratory testing is considered remarkable.  Do your research, as we did ours, before starting anything.  Joshua is 9 years old, still riding a bike and running just like his friends.   

IDEBENONE
:: Kirkman ::
Fact sheet - Catena (idebenone) - Health Canada
smart nutrition
Idebenone next generation CO Q10 for heart circulation brain depres...
Search of: idebenone - List Results - ClinicalTrials.gov
Smart Powder
Idebenone description
Idebenone Benefits | LIVESTRONG.COM
Smart Nutrition Shop: Idebenone
gelcap.sizechart.pdf (application/pdf Object)

Thank you, sounds good.

Joshua's mom said:

  Do your research, as we did ours, before starting anything.  Joshua is 9 years old, still riding a bike and running just like his friends.   

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