Hi There, I would like to know if anyone is using Idebenone in boys with DMD, and if so, is there positive results, or side effects etc,
Kind regards
Maxine Strydom

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Amit,

When Santhera calls, they don't sound surprised, but all you can hear is typing in the background. They ask questions, different ones each time, and give brief updates and information regarding the availability.  Once it is approved in Canada, they are going to do what they can regarding the government with the exception drug status coverage.  All of Joshua's medical information since he started idebenone is being sent to the Cochrane Review

 

Naomi

Just curious - has anyone been able to get Santhera version of idebenone?  I'm a bit leary about purchasing idebonene from some of the internet sites.  I want to be sure my son's getting a pure and high-quality version of the supplement.

 

Joshua's mom said:

If many of you have questions for Santhera, they are really easy to talk to!  You can e-mail or phone them.  They call me every 6 months just to learn the effects it has on Joshua.
moein, where are you buying your idebenone from?

Hi Amit,

I buy it from Kirkman

I have been unable to get a meaningful response from phase III clinical trial sites or santhera regarding safety profile of Catena/idebenone at 900mg. However Google was more helpful.

http://www.swissbiotech.org/php5/aa2/index.php?1=1&id=316437
http://brain.oxfordjournals.org/content/early/2011/07/23/brain.awr1...
http://www.hc-sc.gc.ca/dhp-mps/prodpharma/notices-avis/conditions/c...

It appears idebenone is safe at dosing up to 2250 mg/day. How much it actually helps DMD symptoms is of course unknown, but with a 13yr old showing ever diminishing abilities, I'm beginning to believe the risk of NOT trying it is greater than the risk of an uncontrolled experiment.

I did at last hear from Santhera about safety of Catena at 900mg/day. They gave me a long legal response that amounts to "we won't make any statements about safety or efficacy until Phase III is complete."

 

This was the response I expected, but it kinda makes you wonder why they even have Phase I and II if not to make precisely such statements about safety before they make statements about efficacy.

 

I'll never understand this industry.

 

 

@Amit,Lewis will be 6 in November.To add into this discussion Lewis got a full assessment in July and we just recieved the written report on the physio therapist assessment.Lewis scored higher than last year and displayed negative Gower,which was good news.When he was diagnosed last July they did the same tests as baseline and he was really showing the Gowers. That was how his paediatrician knew to test him for Duchennes.She asked him to get up from the floor and he did the classic Gowers manouvere.He still does it slightly,(one hand to push up ) but not always and more so evening time.Was this idebenone or has he not plateaued yet?He is a tall child (wearing age 8),which i was always concerned would disadvantage him as well..Overall i feel he is in a better place now with idebenone.

Clare, thats interesting.. as our son Dylan, who is also 6 was showing Gower sign before starting steroids(in Jan this year), but since starting steroids, he uses one hand to push up, with a wide stance on both feet!! So that is a good comparision between steroids and idebenone?... Definitely looks like adebenone has a positive effect, maybe without side effects? Damien

 

could be ,lewis' assessment was before he went on steroids,
When Joshua was only on steroids, he did use the Gower's Maneuver.  After approximately 6 months on Idebenone, it slowly started to disappear.  After 1 year of a double dose, it's gone.  The specialists wrote a letter to the Cochrane Review classifying him as 'normal', with no DMD trademarks.
thanks clare...i am hoping that the benefit in Lewis is due to idebenone. How is his stair climbing: before and after idebenone?

Hi,Joshua's mom,

 

I am Wainaina from Nairobi.I hope you and little Joshua are doing fine.Your last post to this discussion is pretty interesting.At what dose did you start Joshua?I have established there is no one stocking Ideb in my town,and i am considering importing it.I see a good number of parents have recommended sourcing from Kirkman's,and i guess that is what i may need to do too.

 

Regards

Wainaina.

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