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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 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
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
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