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IDEBENONE

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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Permalink Reply by Joanne Haswell on March 4, 2009 at 10:49am

Maxine--Search Idebenone and you will find many posts re this. Joanne

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Permalink Reply by Julie Hathaway on March 4, 2009 at 10:56am

What is Idebenone? We are only 4 months into Brandon's diagnosis and we're learning everyday! Thanks,

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Permalink Reply by Moein on July 19, 2011 at 10:47pm

Hi everybody,

I think that Idebenone is worth the try.It is really good and very positive effects are expected to see soon.I was thinking that the positive effects Joshua mom was talking about are biased,but I found that she is truthful in her notices.I am not sure if every body react the same,but again it gives at least more energy.

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Permalink Reply by Clare Harper on July 20, 2011 at 4:50am

i have been using idebenone for a while now ,it is good!! i find it helps with Lewis speech. According to the presentation from the conference i am a bit concerned that boys on steroids are not getting as much from it respiratory wise,any one got a deeper understanding of this?? Lewis is about to go on steroids so would love to have it clear in my mind...

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Permalink Reply by Ofelia Marin on July 21, 2011 at 11:06am

Their presentation is here: http://videos.parentprojectmd.org/conference11/PDF/7-8-11-Meier.pdf

Clare, the non-steroid group in this small trial responded better...we would need to know the ages in each group, I remember one group had older boys.

Moein said:

Hi everybody,

I think that Idebenone is worth the try.It is really good and very positive effects are expected to see soon.I was thinking that the positive effects Joshua mom was talking about are biased,but I found that she is truthful in her notices.I am not sure if every body react the same,but again it gives at least more energy.

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Permalink Reply by Joshua's mom on July 24, 2011 at 12:26pm

Joshua has been using Idebenone for 2 years now. He is 8 years old and just graduated to a bigger bike. We did the 6 minute walk tests before he started, 222, after 6 months of a single dose, 397, and after 1 year of a double dose, 577. He hasn't used the Gower's in more than a year. His respiratory is normal and his school academics are now normal. Physiotherapy became easier for the physiotherapist, and we almost lost our school bus because Joshua doesn't need to use the lift at all anymore. We still have it only because of the extra entrance steps.

Naomi

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Permalink Reply by Eliane Khoury on July 25, 2011 at 3:12am

Naomi,

My nephew is using Deflazacort, can he also use Idebenone?. If so, where do u get it from.

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Permalink Reply by Joshua's mom on July 25, 2011 at 7:11am

Hi Eliane,

Joshua is on Deflazacort as well. I order them from Kirkman.

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Permalink Reply by Marks33 on July 25, 2011 at 4:20pm

Santhera have been running a trial but I think there have been difficulties recruiting for the Phase 3 trial - the exclusion criteria are pretty extensive, particularly as they want to enrol non-steroid users first:

http://clinicaltrials.gov/ct2/show/NCT01027884?term=idebenone&r...

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Permalink Reply by Moein on July 25, 2011 at 4:28pm

I suggest that they recruit non-steroid users for the following reasons:

1.to benefit(if any) from Idebenone as much as possible since they don't benefit from steroids

2.Improvement(if any) from Idebenone in the abscence of Steroids is the real evidence that Idebenone itself is working or not

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Permalink Reply by JUAN PEDRO ARBULU on July 25, 2011 at 6:45pm

Hi Naomi is he now on 577mg? what about deflazacort, how is his dose and since when do you see improvement?, my son is 61/2 years starting next week on deflazacort and has been taking idebenone.

i would like to know if you think the combination makes a difference or is it just idebenone?..for what i read joshua is getting stronger?(no gower´s maneuver).

JPA

Joshua's mom said:

Joshua has been using Idebenone for 2 years now. He is 8 years old and just graduated to a bigger bike. We did the 6 minute walk tests before he started, 222, after 6 months of a single dose, 397, and after 1 year of a double dose, 577. He hasn't used the Gower's in more than a year. His respiratory is normal and his school academics are now normal. Physiotherapy became easier for the physiotherapist, and we almost lost our school bus because Joshua doesn't need to use the lift at all anymore. We still have it only because of the extra entrance steps.

Naomi

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Permalink Reply by Joshua's mom on July 25, 2011 at 9:07pm

HI Juan,

Joshua is on 150mg of Idebenone twice per day. He was supposed to have an increase in his Deflazacort last year, but they saw no need for it. He is still on 12mg of Deflazacort. Personally, I believe the Deflazacort is there for a reason. Adding the Idebenone has almost stabilized him. At the last 2 visits (1 year) there is no Gower's Maneuver.