My sons doc recommended he take 200mg of Idebenone, i am having a really hard time frinding it. Where do you guys order it from? Also Green tea extract 150mg?

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The only supplement we were recommended was caffeine for the ADD side effect of Deflazacort.  The only reason we started Idebenone was because it can be a prescription, but only for Fredrick's Ataxia.  I posted on my wall what Joshua's daily regimen is for supplements and meds.  Doctors aren't usually allowed to suggest supplements unless it's absolutely necessary.  Joshua's specialists started giving our phone number to other DMD families so they can contact us and start supplements as well.

I'm interested in the comment below.  The $40k/year figure - is that what prescription Catena (for FA) costs in Canada today?  What do you mean it's only covered by 2 insurance companies?  In the US as a supplement, or in Canada as a prescription.

 



Joshua's mom said:

 

Catena is based out of Switzerland, Santhera Pharmaceuticals.  There are many subsidiaries though.  The one out of Montreal, Quebec calls us every 6 months to get updates on Joshua and gives updates on the trial overview.  The only problem with it becoming a medication is the price.  Right now we order it and pay approx. $450.00 for a years worth.  Once it becomes a medication, if the price stays the same, it will cost us, if I remember correctly, closer to $40,000.00 per year and it is only covered by 2 insurance companies. 

 

Naomi

That is what Catena costs in Canada!  Joshua's geneticist who also has a patient who has FA gave her my phone number because she couldn't afford the prescription.  In the US it is still a supplement, but in Canada it is a medication.
Most medications in Canada are covered by insurance companies to a certain percentage.  Whatever isn't covered can be claimed at the end of the year and you get a certain percentage back.  There are only 2 companies - Sun Life and Blue Cross - which will cover a percentage of the cost of Catena - but only for FA... thus far.  At the least, you would still be paying $8,000.00 per year with the dose Joshua takes.  That's a big difference from $450.00 per year!

Thanks for the reply. 

 

So, under the Canadian health care system, insurance companies can decline coverage for an approved medication which has no alternative?  And that's for FA?  If it's off label, they cover nothing?

 

A FA patient would pay $8k with insurance coverage?   $40k without coverage?  And $40k for a DMD patient?

 

The economics of it all is fascinating to me. 

 

Idedebone is basically CoQ10, isn't it?  Are you taking an Idedebone or CoQ10 supplement?

Idebenone is more than coQ10, its altered

Does this mean that a drug like ACE 031 (IF APPROVED) will cost 100000000000?!

These numbers are above immagination!Aren't they?

It is really frustraating!

You're right Keith!  It's ridiculously insane since there is only the supplement coQ10 that is close to it.  The difference between the two, from what I've been told and have researched, is coQ10 cleans the body out of any toxinc but can build up in the liver after being on it too long.  With Idebenone, it does the job of the coQ10 then moves on to the muscles and the rest of the body rather than stopping to be secreted out.  Joshua was on coQ10 for the first 5 years after being diagnosed then we went to Idebenone. There is an up side to it becoming a medication though.  It's looking to be approved for other conditions as well which would bring the demand up and the cost down.  Here are some links:  Idebenone.net, Internaf.org, Web MD and Great Vista Chemicals, just to name a few.

 

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. 

Smart Powders is out of stock of both 500mg and 150mg gelcaps. Where do others order theirs?

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Joshua's mom thanks for your very informative reply. The improved performance of Joshua is very good to hear. You believe this improvement is due to Idebenone only. I read that Idebenone is more for improvement in the Respiratory performance and less in muscle strength. My son is 9 years old he is walking but slow in running. I would like to know what other medicines you are giving your child. I read some doctors are suggesting CoQ10, are you giving it. Pl let me know all the medicines suggested by your doctor, I will consult my doctor in India and start those medicines. We are far away from the modern research your help is appreciated.

My emaiid is rahulpdeshpande26@gmail.com if you wish to send mail.

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