PPMD Community

No Idebenone Online Anymore

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?!

Favorite

2 members favorited this

▶ Reply to This

Replies to This Discussion

Permalink Reply by JUAN PEDRO ARBULU on November 12, 2012 at 2:54pm

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.

▶ Reply

Permalink Reply by JUAN PEDRO ARBULU on November 12, 2012 at 2:58pm

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.

▶ Reply

Permalink Reply by Ofelia Marin on November 12, 2012 at 4:00pm

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.

▶ Reply

Permalink Reply by Joshua's mom on November 12, 2012 at 4:29pm

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.

▶ Reply

Permalink Reply by JUAN PEDRO ARBULU on November 12, 2012 at 8:13pm

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.

▶ Reply

Permalink Reply by Anna Mossiat on November 13, 2012 at 4:47am

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!

▶ Reply

Permalink Reply by lisa burke on November 13, 2012 at 7:25am

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.

▶ Reply

Permalink Reply by Ofelia Marin on November 13, 2012 at 10:12am

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.

▶ Reply

Permalink Reply by Denise Bretsik on November 13, 2012 at 10:32am

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?

▶ Reply

Permalink Reply by Phil on November 13, 2012 at 11:27am

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?

▶ Reply

Permalink Reply by Joshua's mom on November 13, 2012 at 2:03pm

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.