Idebenone
Question: Does anyone use the supplement Idebenone for either their children or taking it themselves? If so, have you experienced any side effects? The side effects I read about are
Side effects:
Possible gastrointestinal disturbances, dizziness, headaches, anxiety and uneasiness and sleep alterations.
Any advise from those who are using this supplment would be appreciated.
Replies to This Discussion
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Permalink Reply by christine good on
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I started using it for my 9 y/0 son a few months ago anstead of the CoQ10. Got it from Kirkland. I saw no s/e's. I am now curious to see if there are any changes at his next appt in CCH.
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Permalink Reply by jenn on
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we have used idebenone with both boys ages 11 and 8, are currently using coq10 because we are waiting for another mail order of idebenone to arrive, no issues that we can see, its been a few months and it doesnt seem to bother them at all
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Permalink Reply by David on
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My son takes 180mg of Idebenone every day, and has for last 4 years. No side-effects I can detect.
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Permalink Reply by Joshua's mom on
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Joshua has been taking idebenone for approx. 9 months now. He is 7 years old. He has had no negative side-effects at all. There have been nothing but positive ones. He takes 150mg twice per day. We buy it on-line from Smart Nutrition since it is a medication here in Canada.
Naomi
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Permalink Reply by Tina on
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our son took 150mg triwc a day as well, the Smart Nutrition brand. He had no side effects from it either. We took him off of it since I worried about the interaction of it with other meds. So, now we are waiting on the official Catena's Idebenone trial in Philadelphia.
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Because it is an advanced form of CoQ10, there are no studies I've been able to find that call for it to react with the steroid medication whether it is Deflazacort or Prednisone. When it comes to Catena, here in Canada it costs over $20,000 per year for 150mg once per day. It is incredible! We will be stocking up as much as we can before the trial ends. If it is approved, you will not be able to buy it at health food stores anymore either. Here in Canada, there are already many of us, including specialists waiting to fight for it to be covered by health care. Just a thought...
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Permalink Reply by Terry Porcaro on
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Thank you everyone for your responses. I appreciate everyone's input, it's very helpful and informative. Does anyone know when we will be hearing about the results of Catena's Idebenone trial?
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Permalink Reply by cheryl cliff on
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Good question Terry. I believe third phase results should be available this fall-winter. Keep watching and let us know if you find anything, I will too.
Terry Porcaro said:Thank you everyone for your responses. I appreciate everyone's input, it's very helpful and informative. Does anyone know when we will be hearing about the results of Catena's Idebenone trial?
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