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Joshua is 8 and weighs 64lbs. His deflazacort was supposed to increase last year, but due to the effects of the idebenone, the specialists see no reason to increase it. He takes 150mg of Idebenone twice per day, and 12mg of deflazacort daily.
Hi Terry,
Joshua started with 150mg / day for 6 months then moved to 150mg 2x per day. Idebenone is a super coQ10. Many aren't aware of Idebenone because it is a newer drug called Catena. Maybe use the Catena name and they may change their opinion. If you look earlier in the thread you will find the links to all the Catena/ Idebenone sites. I hope this helps. If you have any other questions feel free to ask. I will answer what I can.
Naomi
Hi Terry,
Joshua started with 150mg / day for 6 months then moved to 150mg 2x per day. Idebenone is a super coQ10. Many aren't aware of Idebenone because it is a newer drug called Catena. Maybe use the Catena name and they may change their opinion. If you look earlier in the thread you will find the links to all the Catena/ Idebenone sites. I hope this helps. If you have any other questions feel free to ask. I will answer what I can.
Naomi
Clare,
When I do the math, your son's dosage is 15 mg/kg. If I applied the same dosage to my son, who is 160lbs(73kg), that would be nearly 1100mg of Idebenone/day, which more than 6X his current dosage.
Has anybody heard of dosing at this level? Of course I'll ask my clinician, but they pretty much won't say anything about it since "it's still in a trial."
-David
Clare Harper said:
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.
The Catena study is dosing at 900mg/day for participants aged 10-18 yrs old. It doesn't indicate variability by body weight.
Since this study is Phase III, it should mean that 900mg/day already passed a safety study. If I can confirm that, I may increase my son to 900mg/day and see what happens.
We swim regularly so I have a very good idea of how his swimming ability has declined over the years. If there is stabilization or improvement, I should be able to detect it.
i wonder what the effect of santhera patent is on over the counter availability of idebenone in the usa....any thoughts? clare, how old is your son?
The Catena study is dosing at 900mg/day for participants aged 10-18 yrs old. It doesn't indicate variability by body weight.
Since this study is Phase III, it should mean that 900mg/day already passed a safety study. If I can confirm that, I may increase my son to 900mg/day and see what happens.
We swim regularly so I have a very good idea of how his swimming ability has declined over the years. If there is stabilization or improvement, I should be able to detect it.
I think it is chance for every DMD to try Idebenone before approval (hopefully) because the price of this supplement will rocket since it will be a drug and it can't be sold online.
It is very interesting when you see your DMD son improve quickly.This feeling will defeat DMD itself.
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