PPMD Community

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 JUAN PEDRO ARBULU on July 26, 2011 at 11:21am

Great, that will be 300mg, please let me know the brand and mg per tablet, please let me know the size too comparing it to maybe protandim.

Thank you.

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Permalink Reply by Joshua's mom on July 26, 2011 at 11:04pm

Hi Juan,

I'll do better than that! Here is the link for Idebenone. It is a long covered capsule. Smaller and easier to swallow than the Protandim size.

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Permalink Reply by JUAN PEDRO ARBULU on July 27, 2011 at 7:14pm

Thank you so much!

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Permalink Reply by Terry Porcaro on July 28, 2011 at 1:31pm

Naomi: Does Joshua see Dr. Wong's team at Cincinnati Children's Hospital because we are going there next week, and would like to ask them about Idebenone.

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 28, 2011 at 4:22pm

Hi Terry,

No, Joshua doesn't see Dr. Wong. We live in Canada.

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Permalink Reply by Moein on August 13, 2011 at 8:20pm

I advise every family to start Idebenone.It must be compared to Steroids since it is really helping.

I ask families not to underestimate the effect of Idebenone

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Permalink Reply by Clare Harper on August 15, 2011 at 5:52am

hi all ,my son also has been on idebenone ,150 mg twice a day,prior to starting steroids and it is great for his speech and over all energy. He has now been on steroids 18 mg deflazacourt for 3 weeks.He is having really bad tantrums and very emotional ,my heart tells me to cut him back to 12mg,anyone done this balancing before?Joshuas mum can you tell me your sons weight?

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Permalink Reply by amit gupta on August 15, 2011 at 12:08pm

moein, what kinnd of effects are you seeing with idebenone?

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Permalink Reply by Ofelia Marin on August 15, 2011 at 2:18pm

Clare, My son started deflazacort at age 3.5 and within 10 days we noticed the behavior change, meltdowns and irritability he never had before. He was on a very low dose, only 6 mg/day, at that time and the behavior was out of control. In time, all this started to improve, he is still not at the level before steroids but much better after 4 months of steroids. We increased the dose to 12 mg/day after a couple of months and we did not see any noticeable change in behavior b/w 6 mg/day and 12 mg/day. We give it to him after school now hoping that helps. I am not certain if he calmed down due to his body getting used to the drug or b/c we give it to him after school. Long story short, he seems better now but still not where he was before steroids. He is still irritable but doesn't have meltdowns too often now. I hate steroids for all these side effects and the fact that they alter their behavior and appearance. :(

Clare Harper said:

hi all ,my son also has been on idebenone ,150 mg twice a day,prior to starting steroids and it is great for his speech and over all energy. He has now been on steroids 18 mg deflazacourt for 3 weeks.He is having really bad tantrums and very emotional ,my heart tells me to cut him back to 12mg,anyone done this balancing before?Joshuas mum can you tell me your sons weight?

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Permalink Reply by Joshua's mom on August 15, 2011 at 10:02pm

We too had those side effects after starting steroids. We turned to caffeine - coffee, tea, coffee beans, anything with caffeine but no or low sugar. Before Ritalin started making money, caffeine is what was used.

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Permalink Reply by Joshua's mom on August 15, 2011 at 10:05pm

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.

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Permalink Reply by wainaina muiruri on August 17, 2011 at 10:21am

Hi,Naomi

I hope your day is well.I am Wainaina from Nairobi,Kenya.I would be really grateful if you could enlighten me abit on Idebenone.Is it the same as COQ10?How does it help the DMD boys?Thanks and bless.

Wainaina.