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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.
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
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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