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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Thanks, should have looked on your page.  on the melatonin, does it make him sleepy when given in morning?

Actually, no!  Due to the effects of steroids and behavior, chocolate covered coffee beans, coffee, green tea, anything with caffeine but low in sugar works great, but he has pretty well grown immune to those.  We started giving him 3mg of melatonin in the morning during the summer & before school started, and it's been working well.  The behavior issues are now normal... a little exaggeration sometimes, but much more manageable.

Ofelia:  My grandsons are on CoQ10.  Is there a major difference between CoQ10 and Idebenone? 

Ofelia Marin said:

I just increased idebenone to 300 mg/day for my 4 yo (16.5 kg) and decreased the steroids from 12 mg every day to 12 mg one day, 6 mg the next. My intention is to reduce to 12 mg every other day. My hope is that minimizes some of the side effects and allows him to grow a little. I do not see any significant change since making this change. Stairs were and still are very difficult for him and he still uses hands to push the floor when standing up. He was on steroids (12 mg/day) for 8 months and although we noticed some improvement in his jumping, he never improved on stairs or when standing up (always used hands to push the floor before and after starting steroids). It has been 2 weeks since we incresed idebenone and reduced the steroids. I do not plan to completely stop the steroids but would be happy if I can do alternate day w/o him losing strength. I will keep you posted.

Moein said:

Is there anybody who put his (her) son on Idebenone and stop Steroids?Is it recommended to be just on Idebenone?

 

This is the difference: http://internaf.org/ataxia/Idebenone_desc.html

I switched to Idebenone simply because preliminary data from the Santhera trial shows some respiratory benefit (more so in the non-steroid treated group though). The brand we use is not Santhera’s (that one is not approved in the US) so one needs to keep this in mind. I just figured the CoQ10 we give also comes from different manufacturers and there is no clear superior one.


Terry Porcaro said:

Ofelia:  My grandsons are on CoQ10.  Is there a major difference between CoQ10 and Idebenone? 

Ofelia Marin said:

I just increased idebenone to 300 mg/day for my 4 yo (16.5 kg) and decreased the steroids from 12 mg every day to 12 mg one day, 6 mg the next. My intention is to reduce to 12 mg every other day. My hope is that minimizes some of the side effects and allows him to grow a little. I do not see any significant change since making this change. Stairs were and still are very difficult for him and he still uses hands to push the floor when standing up. He was on steroids (12 mg/day) for 8 months and although we noticed some improvement in his jumping, he never improved on stairs or when standing up (always used hands to push the floor before and after starting steroids). It has been 2 weeks since we incresed idebenone and reduced the steroids. I do not plan to completely stop the steroids but would be happy if I can do alternate day w/o him losing strength. I will keep you posted.

Moein said:

Is there anybody who put his (her) son on Idebenone and stop Steroids?Is it recommended to be just on Idebenone?

 

Hi Naomi: Hi..this is Govind. My son is 6 and we got th diagnosi. Couple month ago. Great to hear that you son is really benefiting from Idebenone. Is it available in the US over the counter or can I get it online ? I thought it was still undergoing cliical trials.I am using green tea extract for my son. Also, we do not have access in US to deflazacort...is there definitive proof better than prednisolone ? what physiotherapy exercises is Joshua doing?

Hi Govind,

You cannot purchase Idebenone over the counter because it is a prescription for Frederick's Ataxia.  I'll add some links at the bottom which you can decide on.  As for Deflazacort, many others go through Master's Marketing out of the U.K. to retrieve it.  You do need a prescription and they mail it to you as well.  I'll also add a link to a site which his physiotherapist at school uses since Duchenne is completely it's own work of art.  I hope these links help.

Naomi

IDEBENONE
:: Kirkman ::
Fact sheet - Catena (idebenone) - Health Canada
smart nutrition
Smart Powder
YouTube - Stretches for Duchenne Muscular Dystrophy
Physiotherapy Management for Duchenne Muscular Dystrophy

Thanks a lot for the links, Naomi. Our doctor does not think there is any added benefit of Deflazacort over prednisolone. He did recommend CoQ10 as well as ECGC I.e. tea catechin. I see you are giving your son 1000 mg/day of l-carnitine....I will start that for my son. I have also heard that creatinine might be a good supplement....any feedback on it ? I do not want to give too many supplements either.

HI Govind,

The biggest benefit between Deflazacort and Prednisone, is the swelling, weight gain & scoliosis extremes.  Below is a link for you.  As for too many supplements, you are more than welcome to look at my page.  It may look like a lot, but the doctors have seen such an effect that they now prescribe them.

Naomi

Deflazacort Vs Prednisone

Hi Govind,  We give our son creatine and hemp protein (it contains a natural balance of all the amino acids).  My son takes quite a few supplements as well as vitamins and minerals but once you get into a routine it doesn't seem like too many pills to be taking.  He very rarely complains about having to take the medicines.  Best wishes. Ruth xx

Govind said:

Thanks a lot for the links, Naomi. Our doctor does not think there is any added benefit of Deflazacort over prednisolone. He did recommend CoQ10 as well as ECGC I.e. tea catechin. I see you are giving your son 1000 mg/day of l-carnitine....I will start that for my son. I have also heard that creatinine might be a good supplement....any feedback on it ? I do not want to give too many supplements either.

Hi Govind,  My son also takes alot of vitamins and minerals and his medications.  at first it seemed like a lot but like Ruth said, you kind of get in a routine.  recently after my son was taking idebenone for 6 months and his pulmonary function increased my son said when I wanted to start him on more vitamins, he would because he said, "they are helping me mom, I can breathe better and I want to take them to help me be stronger".  He is 11 and I think he is now starting to realize how important these vitamins are for him.  We try to split them up into 3-4 times a day, so not too many at one time.  good luck.

 

It seems that the development of any drug for DMD will take at least 10 years,so I am afraid that the DMD boys who may benefit from any treatment (if any) ARE NOT BORN YET!!!!!!!!!!!!!!!!!!!!

Idebenone is still in a clinical trial!notice that Idebenone is just an antioxidant and it is available as supplement,so immagine how long it is gonna take a drug as ACE 031 or Utrophin (I will not say gene transfer because it is gonna take 200 years!!!!!!

I am very disappointed!!!!

Hi Moein,

Why do you feel so disheartened? I may be wrong but I've just read an article on biglycan for instance (published in this website) saying that it everything goes well, the clinical phase will start late 2012 or at the beginning of 2013. They're not talking about 10 years...

 

Moein said:

It seems that the development of any drug for DMD will take at least 10 years,so I am afraid that the DMD boys who may benefit from any treatment (if any) ARE NOT BORN YET!!!!!!!!!!!!!!!!!!!!

Idebenone is still in a clinical trial!notice that Idebenone is just an antioxidant and it is available as supplement,so immagine how long it is gonna take a drug as ACE 031 or Utrophin (I will not say gene transfer because it is gonna take 200 years!!!!!!

I am very disappointed!!!!

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