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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Does anybody give their son idebenone AND protandim? Or does one counteract the other? My little one is 2.9 y/o and weighs about 30lb. Any advice on dosing for idebenone would be appreciated. He already takes half a protandim daily. Also, anyone here get idebenone shipped to the uk?
Hi Lisa, i give lewis both ,he weighs 4 stone 5 lbs,and he gets 1/2 protandim in the morning and 1/2 in the evening,idebenone 150 mg in morning and 150 mg at bedtime.I did get it shipped from the states to the UK but the import duty was really high.If you have friends/family in the states get them to order it for you and post it over,thats what i do,and it is a lot cheaper,

thanks Clare
Hi,  I was wondering, where does everyone order their idebenone from?  thank you
http://idebenone.net/order.html hbc protocols is who i use , i think some other parents use kirkman

Clare,

 

I looked at those, the only thing is they are 50 mg capsules, that means according to our neurologist who said to take 900 mg daily, Alex would have to take 18 capsules.  he takes so much vitamins and medicines, this is too many to take.  I was looking for either a 100 mg cap or 180 mg cap.  Kirkman is so expensive.  any other suggestions?  thanks so much

Hi Donna ,

We buy 150mg capsules from kirkman.

You can buy empty big capsules and you can fill it with of couple of 50 mg capsules, if you like.

How old is you son?

Thanks,

Amrit

He is almost 11. He has duplication of exon 2 BMD. His doctor when i asked him about idebenone, said to put him on 900 mg of idebenone or 900 mg coQ10.   this doc usually does not recomend vitamins but this time he said they are recommending it now for all with DMD/BMD.  so for me this sounds promising.  we are going to do the 3 min walk before starting to see where he starts out and then measure him every three months.   Primaforce has a 180 mg capsule which averages out to be .49 cents and kirkmans has the capsule at 150 mg at  .57 cents.  I think I am going to get the Primaforce.  I have checked everywhere.  I may call primacare and see if you buy in bulk, the come down in price.  how old is your son.  hope he is doing well.

 

My son is 7.5 and we give him 300mg. we are planning to move up to 450mg. We see dr wong. We started him on it seeing other parents. My son is doing fine. Thanks

Kirkman is cheaper than Smart Nutrition, but Smart Nutrition sends the Idebenone as a gift so you don't have to pay extra for postage.  Contact them to see what the price difference would be.

We started Chase (7) on idebenone from Kirkman two weeks ago, ramping up from 150mg to 600mg.  He's done great with swallowing the pills (150mg ea or 4 pills/day), but we haven't seen any effects, good or bad.  Hoping to see some difference in the next month or so.

 

We may also increase to 900mg, since that's the level his neurologist suggested.

 

Thanks for your reply Clare. I'm going to order some and start Seth off on 150mg as he's still just a toddler. I'll shop around and see if any if the companies will mark it 'gift' as I, too, have been stung on import tax before!
Regards
Lisa
Donna, just for you to know, smartpowders does a 500mg capsule of idebenone.

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