Lukey recently came back from Cincinnati and after being on Co Q 10 for a year and a half his level dropped considerably. He takes 300mgm. per day of chewable Co Q 10 from Epic 4 Health. We were advised to change brands although Epic 4 Health was their initial recommendation. He takes all of his supplements and deflazacort with grape juice. We will be changing the Co Q 10 brand to Nature Made as suggested. Has anyone encountered this with their boys? Somewhere on the old site I remember reading about incompatibility with some supplements and certain juices but I was unable to find it. Any help or advice would be appreciated. Joanne, Lukey's Grandma

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We were just prescribed idebonone, a prescription strength of coQ10.
What hospital prescribed it and where are you obtaining it? Thanks, Michelle

Joshua's mom said:
We were just prescribed idebonone, a prescription strength of coQ10.
We are in Manitoba, Canada and we go to the Rehab Centre for Children to see all the specialists at the same time. The doctor who prescribed it is from L.A. though. There is no pharmacy here in Manitoba so far that fills this prescription, but we may be able to obtain it through our local Health Sciences Centre hospital outpatient pharmacy. I'll find out tomorrow.

Naomi
I just spoke with the outpatient pharmacy and we are having to order it in the same way we do the deflazacort. It is FDA approved, but not available at all pharmacies. It has to come in from elsewhere as does the deflazacort. The good news is it is cheaper this way :)... it may just take a little longer to get started.

Naomi

Joshua's mom said:
We are in Manitoba, Canada and we go to the Rehab Centre for Children to see all the specialists at the same time. The doctor who prescribed it is from L.A. though. There is no pharmacy here in Manitoba so far that fills this prescription, but we may be able to obtain it through our local Health Sciences Centre hospital outpatient pharmacy. I'll find out tomorrow.

Naomi
Thanks, let us know how it goes with ordering and all and where it is ordered from, as if doctors here start to have us order it, we'll know where to go. I know they have it here to order in the US, but not the prescription strength yet I believe. Thanks, Michelle
I just heard that this drug is available through pharmacies, we just have to find which one. That's the good news. The bad news is the cost... $20,000.00 / year for Joshua's dose which is 150mg 3 x a day, which works out to be $50.00 / day. OUCH!!! We're still working on the insurance side of it.

Naomi
I just got ahold of the company itself and they directed me to their Patient Support Program because the medication is so expensive. What they do is convince the insurance companies to cover the medication. The phone number they gave me is 1-866-270-1733. I hope this helps someone!

Joshua's mom said:
I just heard that this drug is available through pharmacies, we just have to find which one. That's the good news. The bad news is the cost... $20,000.00 / year for Joshua's dose which is 150mg 3 x a day, which works out to be $50.00 / day. OUCH!!! We're still working on the insurance side of it.

Naomi
what does coq10 do?
This new version of coQ10 is called Catena. To explain what it is I have included their website description.

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/notices-avis/conditions/c...

Naomi
Curious about this new drug. The studies conclude that is can help those with Friedreich ataxia. Studies have yet to be completed on MD. There is, to date, no solid evidence that this will do anything. Please let me know if you have found solid evidence somewhere. The drug has side effects that seem to outweigh it's potential effectiveness. This is very $$$$ as well.
Has anyone tried a plain and simple organic, natural diet to help slow the progression? I look up the supplements and then the foods they are most often found in. I offer those foods. I avoid, as much as possible, refined foods - especially white flour and sugar. My son eats lots of wild salmon, nuts, fruits and veggies and is doing exceptionally well. Still running at two months shy of 10.

Joshua's mom said:
This new version of coQ10 is called Catena. To explain what it is I have included their website description.

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/notices-avis/conditions/c...

Naomi
this drug is in Phase IIb trials for DMD and getting ready for Phase III.

Here is a paper on it: CLICK HERE
Thanks tons for the paper, it's very, very interesting. Do any MD docs prescribe it yet? Is it FDA approved? Have you found evidence-based studies with positive outcomes?
Thanks so much.

MicahsDaddy said:
this drug is in Phase IIb trials for DMD and getting ready for Phase III.

Here is a paper on it: CLICK HERE

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