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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http://www.idebenone.net/ Wainana read this.It is a lot more powerful tha COQ10.I live in Ireland and i get this shipped for my son.The change in him is unreal.He had some speech issues and poor concentration.His confidence is raised as he shows no signs of sppeech impediment and he overall has more energy.Again the gower manouvre has gone from most of the time to sometimes,more so in the evening.This stuff realy helps.You can take it when on steroids.My son weighs 44lbs and takes 150 mg idebenone in the morning and at bedtime.He has been on it for about 6months but you will notice a change really quick once they start taking them.He has only begun steroid treatment with deflazacourt 3 weeks ago so i am still monitoring how he is getting on ,but i have a feeling he needs less than the standard dose of steroid while taking idebenone.I will see how it goes over the next few weeks but at this stage my doctor has cut him back to 15 mg delazacourt due major tantrums

.I think Naomi might have a good balance worked out between the two for her son.

Thanks,Clare, for this info.

I am kind of starting out on this trip with my DMD boy,8 years old,name Kamau.So am getting down to reading as much as i can on DMD and all the med products and supplements that my fellow DMD parents are using with their kids.Does one require a doctor's prescription to purchase Idebenone,or it is an over- the- counter buy?I am yet to locate a stockist with Deflazacort here in Nairobi but am still checking,though i,too,may have to get both shipped in.Thanks.

Regards,

Wainaina.



Hi Wainina ,you will find good help on this site as all experiences are shared and you are not alone.This can be ordered on line with no prescription.If it helps it is cheaper to get it shipped from a home address in USA rather than from the supplier as you get chaarged import tax.Not sure how it works in Nairobi.There are trials on idebeone ,http://www.parentprojectmd.org/site/PageServer?pagename=Advance_res...

Here are some sites regarding Idebenone:

 

Kirkman, Idebenone l, Idebenone ll, Santhera, Catena

Thanks for the info,Clare.Yeah,this site is proving to be a goldmine of info.I am not sure Ideb is here in Nairobi,but i am currently checking.I have tried to talk to some pharma companies to see if there are any clinical trials for DMD in Nairobi, it has been turning negative.But again it could be that lack of any organised forum for DMD parents and patients here has led to lack of a common voice to request the pharma fraternity for an opportunity to participate in the clinical trials.Or may be they have to take into consideration the cost implications,considering the distances involved.Have a good day.

 

Regards

Wainaina 


My son has been taking Idebenone since he was 7 yrs old, 180mg per day. It has not had much benefit I could distinguish from the steroids (Prednisone). It surely did not keep him ambulatory, he switched to wheelchair at 11 years.

 

But he is 160lbs now, and still taking 180mg/day. That is much lower than dosage discussed here. I will ask his clinician about the wisdom of increasing it.

 

Thank you to Maxine for starting this discussion.

david, did you get idebenone from smartnutrition/kirkman (over the counter) or some prescription brand from somewhere?

I get it over the counter from strongernutrion.com. Doc never wrote prescription, but did specifially recommend this supplier.

Thanks, David.

David said:

I get it over the counter from strongernutrion.com. Doc never wrote prescription, but did specifially recommend this supplier.

is it dangerous for my son to be taking the regular coQ10?
No, Joy, it isn't dangerous for your son to be taking regular coQ10.  Idebenone is like a "super" coQ10.  Joshua was on coQ10 for approx. 4 years before he started idebenone.

Hot off the presses regarding Santhera patent filing in US for Catena.

 

http://www.reuters.com/article/2011/08/24/idUS47847+24-Aug-2011+HUG...

 

I presume the company would not spend the money/effort on patent filings if they weren't encouraged by trial results.

 

 

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