Ubiquinone is now available at GNC. I can get it for 41 cents per 100mg pill vs. 20 cents for CoQ10. Without definitive studies, is it worth the doubling in cost to go for the Ubiquinone? I'm really torn. We could increase CoQ10 from 200mg per day to 300mg and still have a lower cost than 200mg of Ubiq.

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Because it is a "new" medication, there is only one company that will cover a small percentage of it because of the price. I didn't like buying it on-line either, but that was my only alternative. If we were to buy it for 20K, we had no choice but to buy 1 years worth. My concern was the what if... What if he reacts to it or it doesn't make a difference and we have 1 years worth. The prescription would have had to be sent to the company by the doctor and we would have had to pay for it before they sent it. What's the difference if you buy it on-line? That was my thought. The company we bought it from though, has a very good record and his was tested to be sure it had what it was supposed to before we gave it to him. The neurologist knew of the company and never had any concerns as to whether or not it had enough idebenone in it. It does, and is doing a fabulous job. A mom of a girl with DMD split the 1 year supply from Smart Nutrition with me at first and they saw a difference within weeks as well. We thought that if we split the first one and see how well it works, then at least we didn't invest a whole lot if it didn't. We don't need to split it anymore because it did make the difference we were looking for it to make.

Naomi
I think you bring up some very good points, Ofelia - many of our sons are already taking multitudes of supplements and medications as it is, and the foreseable future holds similar strategies which may have differing impacts on budgets based upon insurance coverage. I know that my family contributes to a flex spending account (limited to $5k/yr) that allows us to buy non-covered items pre-tax, but there are some caveats to be wary of plan-to-plan when applying to over-the-counter drugs and supplements that aren't specifically perscribed and/or FDA-approved.

Naomi and Joshua's success is very encouraging, but your chemistry question is right on the mark, too. Formulations vary from manufacturer to manufacturer, which can significantly affect safety/bioavailability/effectiveness, so we're left with experimentation and anecdotal evidence through shared experiences. Worth a shot? Hope would have me emphatically say "yes," but caution has me on the fence.

Ofelia Marin said:
How much will your insurance cover out of the 20K? My concern with buying it online vs Santhera's brand is that we do not know if they have exactly the same chemistry... I whish some labs (CINRG or others) could look into it. If Santhera's brand gives good results in the clinical trial and is FDA approved for DMD, I hope the insurance covers most of the price. Though 20K is very high thinking that our sons will need a cocktail of drugs to make a significant difference in slowing disease progression...

Joshua's mom said:
The only problem with getting it as a prescription is the price goes waaaaaay up! Like I said before, we paid $347.00 for a years worth... but had we bought it as a prescription (which we had) here in Canada, we would have had to pay $20,000.00 per year! I think I'll just buy it from the U.S.. It sounds pretty sad to have to get it from another country in order to afford it though. Don't you agree?

Naomi
I really can't imagine that an oral drug would possibly cost that much. That's pure speculation and incredibly unlikely (in the U.S. at least, I have no idea what the government run health industry charges in Canada) seeing as how very similar chemistries are already on the market over-the-counter for a fraction of the cost. Even with lower bioavailability, a parent could buy OTC and boost the dosage substantially and come out much cheaper than $20K. Santhera is in the business to make money and could never do so with that pricing structure. They wouldn't even be testing the drug if they thought they would have to charge that much.

That said, my insurance (again, here in the U.S.) will pay 100% of the cost provided the drug is FDA approved.
Are the pills small like CoQ10? Are they hard? Thanks, Michelle

Joshua's mom said:
We ordered it from Smart Nutrition. I comes in a matter of weeks through the mail.

Naomi

http://www.smartnutrition.info/idebenone.html
They are about 1/4 inch long and thin and have the easy swallowing cover on them to make them easy to swallow. They are capsules and smooth. They aren't round with liquid inside like the CoQ10 are. Joshua is 6 and has no problem swallowing them though. They are a form of CoQ10 which cannot be taken with it because it is to replace the CoQ10... not add to it. The effects of the idebenone are incredible. Once they see and feel what the effects are, there is no problem taking this one!!!

Naomi
Is Ubiquinone equivalent to Idebenone? I'm jumping in late-- I thought Idebenone was a prescription. I would definitely try the GNC formulation at least for comparison sake, as compared to the 300 mg of COQ10 my son takes now. Does anyone mind bringing me up to speed on this?

Thanks!
Ubiquinone is equivalent to CoQ10. Idebenone is like an extra strength CoQ10 which instead of building up over time, it releases into the rest of the body; including muscles and bones. In Canada we can't find idebenone over the counter because it is approved as a medication for Fredrick's Ataxia disease with many similar symptoms. We did have a prescription for it because of Duchenne but it is not approved for Duchenne as of yet. It is only approved for one disease, and only two insurance companies will cover it, but only a small portion and it's hard to get them to cover. This is why we, and many of us, order it from the U.S..

Naomi
I am confused. Idebenone is undergoing clinical trials to become a branded treatment for DMD, but it's currently available off the shelf for $30 per bottle from a Canadian pharmacy? Is this correct?

Thanks.
No, you can't buy it in Canada off the shelf because it is already FDA approved as a medication for Fredrick's Ataxia. I have to buy it from the U.S.. That's why I buy it on-line.

Naomi

Alex said:
I am confused. Idebenone is undergoing clinical trials to become a branded treatment for DMD, but it's currently available off the shelf for $30 per bottle from a Canadian pharmacy? Is this correct?

Thanks.
I started giving my son Idebenone, 225mg daily , he is now having some stomach ache after 1 week of havig the pills, anyone familiar with this??, is it frequent on other boys?? what tod do??
JP.

Joshua's mom said:
No, you can't buy it in Canada off the shelf because it is already FDA approved as a medication for Fredrick's Ataxia. I have to buy it from the U.S.. That's why I buy it on-line.

Naomi

Alex said:
I am confused. Idebenone is undergoing clinical trials to become a branded treatment for DMD, but it's currently available off the shelf for $30 per bottle from a Canadian pharmacy? Is this correct?

Thanks.

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