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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That's really strange.  Since I just ordered from Kirkman this week and received the idebenone yesterday, I'm hoping it's just a momentary glitch...

It is virtually going off the market because it is so close to being a medication.  I did find some links which still sell it in a lower dosage, which means our boys swallow more pills... We are seriously going to have to figure out a way to have it prescribed for our boys before the clinical trials are done.  There has to be a loop hole somewhere....

Relentless Improvement, Smart Drugs, Smart Nutrition

Naomi

Odd. I just bought some. Smartpowders are still selling it though.
Smart-drugs are selling it too -150mg capsules. Has anyone else used these suppliers? I've always used Kirkman because they are a trusted supplier. I worry about buying from anywhere else online as I could be getting anything!

I just searched for Idebenone at Kirkman and it comes up "no records found".  I even went through the site map and couldn't find it.  You either hit it at the right time or we are doing something wrong.  If you could post your link to where you order from, that would be great!  Smart Powders still has them posted for sale but are "out of stock" and may not sell more.  The FDA took them off the shelves because of the "labeling".  Especially the 500mg capsules, they said those will not be back on the shelves.  What is the dose you give when taking the 150mg capsules? 

Hi Joshua's mom. I think I must have bought at the right time as I get the same result as you on Kirkman now. I give Seth 300mg daily (mixed into melted chocolate). I slowly ramped up the amount from 75mg over 2years. I'm a bit worried about idebenone being taken 'off the market' - are there concerns for its safety?? I would have thought we'd have heard if there was? My son's primary physician (at Great Ormond Street in the UK) knows he's taking it and we just saw him recently. He made no comment about it. Has anyone else heard anything???

I am giving my 7 year old son 1000 mg of Idebenone,so do you think that I have to lower the dose because of the availability of Idebenone?

What IS THE SUITABLE DOSE?

The suitable dose is 500mg to 950mg, but we, as well, treat it like a medication and work our way up.  I don't believe it is being taken off the market for any safety concerns.  I strongly believe it because it is almost a medication worldwide.  Before these trials started taking place, it was only approved for Frederick's Ataxia - nothing else.  Now it is in trials to be approved for DMD, Parkinson's, Alzheimer's and more.  Now is when the politics start regarding the availability.  Once it does become a medication, we will have to order directly from Santhera and the price is ridiculous until it is approved for many more conditions. All of us who's children are taking idebenone now, are going to have to contact Santhera and any specialist, government health care system, We have to start very soon and if Pat Furlong would help us, that would be GREAT!

Naomi

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.

Hi,

I called Smartpowder and they will have Idebenone again on this wednesday

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.

This is Santhera's trial. They need 240 subjects, age 10-18:

http://www.clinicaltrials.gov/ct2/show/NCT01027884?term=santhera+id...

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