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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Hi Naomi:  Did Joshua start off taking 150 mg of Idebenone twice per day when he first started two years ago, or was it a lesser dosage at that time?  My grandsons just had their visit at Cincinnati Children's, and while the doctors increased their dosage of CoQ10, they still aren't recommending Idebenone.  I guess they are waiting for the results of the study before recommending it.
Joshua's mom said:
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 Naomi:  Thanks for your response.  Terry

Joshua's mom said:

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,

  • Does your doctor intend on increasing the Idebenone dosage as your son grows heavier?
  • How confident are you that improved function was related to Idebenone rather than the steroids?

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.

Hi David,my doctor is not involved with the idebenone regime,it is not available here in Ireland.I looked into it mysef and with the lack of treatments available i thought i would trial it as it did not have the same side effects as steroids.He has been on idebenone for 7 months and when i started it i noticed quite quickly his balance,energy,gross motor skills ,attention span and intersest in things all improved.When you state by weight it seems quite a lot....maybe have a read through the dosing regimes that are in trial by Catena and err on the side of caution.I think i remember reading proposed trial dosing ,it was 450mg for a child and 900mg for an adult rather than per kg.Lewis only started steroids 6 weeks ago and while i see some slight increase in muscle tone /strength nothing else stands out any different than before and that may be for a variety of reasons that none of has any understanding off,i am just going by intuition.

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?

great!!

David said:

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.

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.
naomi, has santhera been surprised at joshua's progress, since catena study did not report anything substantial other than respiratory function improvements?
My son has been on Idebenone for 3 months.I think that Idebenone has to be approved for DMD.This Idebenone is working well with my son and I dare to say that it MIGHT CHANGE THE COURSE OF DMD


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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