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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It is only approved in Canada for FA at this time. The results of Phase II clinical trial for DMD looked good hence the Phase III should start sometime this year: http://www.santhera.com/index.php?mid=19&vid=&lang=en

It is a synthetic analog of CoQ10, there is a slight difference which might be improtant in DMD:

"When blood flow is seriously reduced to any part of the body - as in a heart attack, stroke, trauma, shock or chronic poor blood circulation - cellular/ mitochondrial oxygen (O2) levels quickly drop in the affected region. Free radicals quickly damage cell/organelle structure and function, as well as rapidly halt ATP energy generation by the electron transport chain. Brain and spinal cord cells are especially prone to such damage, and may be irreparably damaged or even destroyed within minutes.

Studies have shown that in such circumstances Idebenone prevents the free radical damage and maintains relatively normal cell ATP levels. In short, while Idebenone can effectively substitute for Co Q10's positive and life essential functions, it doesn't have Co Q10's free radical producing feature which occurs under hypoxic (low oxygen) conditions. "



irishgirl said:
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.

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

Here is a paper on it: CLICK HERE
Ofelia,

I had given up on following the idebennone research because the company had gone silent after their Friedrich's Ataxia trials did not produce good results, and I'm not seeing anything on their website about Phase III trials other than some bland statement like, "Santhera intends to seek protocol advice from the European Medicines Agency (EMEA) and the US Food and Drug Administration (FDA) in preparation of the further clinical development of Catena®." Have your spectacular data mining skills turned up something more specific? Alex is starting to run out of time, and I'm looking for any sort of bridge to keep him on his feet and able to care for himself until some more powerful treatments come on line, when ever that's going to be. This and Losartan seem to be pretty promising in that regard, but I don't want to start giving him medications until there's real evidence that they have a measurable beneficial effect in human beings with DMD and don't cause harm at the high levels that Ms. Furlong told us were likely to be necessary.
Hi Paul,

You are right. Santhera doesn't seem to do that well after the dissapointing FA results... I do not know if they have the money to start a Phase III for DMD soon. The plan was to start enrolling this summer but nothing seems to be moving in that direction unfortunately.

We need to ask Pat about the multi-site Losartan trial she mentioned in her recent blog. They discussed this one for a long time...it would be great if they secured funding to start sometime soon.

Ofelia

Paul Cliff said:
Ofelia,

I had given up on following the idebennone research because the company had gone silent after their Friedrich's Ataxia trials did not produce good results, and I'm not seeing anything on their website about Phase III trials other than some bland statement like, "Santhera intends to seek protocol advice from the European Medicines Agency (EMEA) and the US Food and Drug Administration (FDA) in preparation of the further clinical development of Catena®." Have your spectacular data mining skills turned up something more specific? Alex is starting to run out of time, and I'm looking for any sort of bridge to keep him on his feet and able to care for himself until some more powerful treatments come on line, when ever that's going to be. This and Losartan seem to be pretty promising in that regard, but I don't want to start giving him medications until there's real evidence that they have a measurable beneficial effect in human beings with DMD and don't cause harm at the high levels that Ms. Furlong told us were likely to be necessary.
Dr. Leshner at CNMC in DC mentioned the following in an email to us. "Idebenone is very similar to CoQ 10--- the manufacturer (Santhera) is proposing studies to see if Idebenone is superior to Co Q 10 in DMD children. Our own study of CoQ 10 showed at best a very modest effect. Idebenone may have better GI absorption than CoQ10 but at this point I am not recommending changing meds until we have more information. I suspect that there will be some updates next month at the World Muscle Society meetings."
Just FYI...



Ofelia Marin said:
Hi Paul,

You are right. Santhera doesn't seem to do that well after the dissapointing FA results... I do not know if they have the money to start a Phase III for DMD soon. The plan was to start enrolling this summer but nothing seems to be moving in that direction unfortunately.

We need to ask Pat about the multi-site Losartan trial she mentioned in her recent blog. They discussed this one for a long time...it would be great if they secured funding to start sometime soon.

Ofelia

Paul Cliff said:
Ofelia,

I had given up on following the idebennone research because the company had gone silent after their Friedrich's Ataxia trials did not produce good results, and I'm not seeing anything on their website about Phase III trials other than some bland statement like, "Santhera intends to seek protocol advice from the European Medicines Agency (EMEA) and the US Food and Drug Administration (FDA) in preparation of the further clinical development of Catena®." Have your spectacular data mining skills turned up something more specific? Alex is starting to run out of time, and I'm looking for any sort of bridge to keep him on his feet and able to care for himself until some more powerful treatments come on line, when ever that's going to be. This and Losartan seem to be pretty promising in that regard, but I don't want to start giving him medications until there's real evidence that they have a measurable beneficial effect in human beings with DMD and don't cause harm at the high levels that Ms. Furlong told us were likely to be necessary.
Hi, I am giving Liquid Co Q 100 mg to my son who weighs 20Kgs. This is from Epic 4 Health. Does any one have any experiences with it.... I live in India and buy my quota annualy from US and have it shipped here. Any info will be helpful. Thanks
We've been using that for several years now with very good results. Sam's levels are always good when checked.

Ruchika Batra said:
Hi, I am giving Liquid Co Q 100 mg to my son who weighs 20Kgs. This is from Epic 4 Health. Does any one have any experiences with it.... I live in India and buy my quota annualy from US and have it shipped here. Any info will be helpful. Thanks
Thanks Laurie... i read all this info on co q levels dropping despite giving the supplement and i was suddenly scared. Hence i wanted to know if the one being given by me is good. we did not get his co q levels tested here... In india we do not have the facility to check the levels..... hence had to rely on gut feel to start and continue with the same. Dr Wong had also given the product a thumbs up when we visited her last year in june. Thanks again for the info...

Laurie Paschal said:
We've been using that for several years now with very good results. Sam's levels are always good when checked.

Ruchika Batra said:
Hi, I am giving Liquid Co Q 100 mg to my son who weighs 20Kgs. This is from Epic 4 Health. Does any one have any experiences with it.... I live in India and buy my quota annualy from US and have it shipped here. Any info will be helpful. Thanks
My son has just started taking Co Q 10. We bought the Qunol Liquid. He doesn't like the test and won't drink it. I tried it and I don't blame him it is terrible. He isn't old enough to take it in pill form. Do you have any ideas for a liquid that tastes good or has no taste? We would ideally like to mix it in with milk. Thanks.
We use Co Q 10 chewable tablets from Epic 4 Health with no problems.

Amanda Hammond said:
My son has just started taking Co Q 10. We bought the Qunol Liquid. He doesn't like the test and won't drink it. I tried it and I don't blame him it is terrible. He isn't old enough to take it in pill form. Do you have any ideas for a liquid that tastes good or has no taste? We would ideally like to mix it in with milk. Thanks.

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