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In the small group phase IIa trial that showed safety and efficacy Santhera gave patients 450 mg a day (150 mg in each meal).

In the trial that is now conducted (I hope)/ Santhera company was mentioning giving 900 mg a day of Catena (Idebenone).

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my son is 15 and had been taking 1000mg daily for last 5 years. no noticeable side effects.
It's important to note that the safety was proved with boys between 10 and 18. High dose idebenone is toxic in vitro to brain cells http://www.ncbi.nlm.nih.gov/pubmed/21547417# so this dose may be dangerous to young kids. Remember that it's a drug that also affects the brain in other ways so we should be very carefull with it. Nobody knows nothing about the growing brain and even less in DMD.

Hi David,

How is you son doing now. Hope he is doing well. Please share.



David said:

my son is 15 and had been taking 1000mg daily for last 5 years. no noticeable side effects.

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