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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Lisa, Yes thank you so much, I ordered from them today.  It was $118, taking two pills a day which will last for 4.5 months.  came out to about $1.40 per day compared to like $3. something for kirkmans and the others.  We start tomorrow morning, hope goes well.  Alex did a 3 minute walk in PT today and walked 320 feet.  They said they will repeat every three months to see if he is making progress.  I pray to God this helps.  thanks to everyone for all the great info.  With out PPMD Community, I would not know half the things aboud DBMD that I have learned on here.  Thank you all.

Hi Donna

Hope you and your boy are fine.From which supplier did you get your Idebenone stock?I need to compare with the prices Kirkman sent to me.Thanks and have a blessed day.

Let us know how you get on Donna. i hope it helps. I'm about to start my 2 year old on idebenone.

Hi,

Would ask you where you hold the tablet Idebenone, whether it is necessary to keep in the refrigerator?

Thanks


I order fromhttps://www.smartpowders.com/search.aspx?searchterm=idebenone  if you are taking 900-1000 mg it comes out to $1.40 per day.  I order enough for 4.5 months.  good luck.  I think you store at room temp.

 

I will be starting my son on 900mg / day starting as soon as I get my shipment after getting green light from his clinic doc yesterday.

 

I wanted to say "why the heck didn't we start him on high dosage when he was diagnosed 8 years ago?" but I bit my tongue. In related news, my doc told me that Santhera has reached out to about a new trial site in California just this week. Chances are we won't qualify because they always start with ambulant boys, but it does suggest that other trial sites are reporting progress.

 

Thanks Juan for starting this thread it really pushed me to get this done, I'd been thinking about it for some time. Thanks to Lisa and Donna for the recommendation on Smart Powders, you saved me about $1000/year.

 

-David

Hope it goes well David.  We are now up to 600 mg/day, gradually increasing, bought some idebenone at local store just to increment the dose over a month period.  and then change to the 500 mg Smart Powders twice a day. I did not feel we needed to increment the dose over a longer period and doc said he agreed and to  just increase it this way and should be fine for tolerance.  maybe we see a little sign of improvment, still walking and he has not been out of breathe so much in the last few days.  We will see.  doc did take him off prednisone for two months because of too many side effects of weight gain, edema.  Has only fallen one time this week since being off steroids.  I am hoping to see progress with Alex, especially now that he is off steroids, should be a more accurate look at if he is benefitting from the idebenone since not on prednisone.  I pray everyday this will work and they also come out with something to help.  Good luck to everyone.

David said:

I will be starting my son on 900mg / day starting as soon as I get my shipment after getting green light from his clinic doc yesterday.

 

I wanted to say "why the heck didn't we start him on high dosage when he was diagnosed 8 years ago?" but I bit my tongue. In related news, my doc told me that Santhera has reached out to about a new trial site in California just this week. Chances are we won't qualify because they always start with ambulant boys, but it does suggest that other trial sites are reporting progress.

 

Thanks Juan for starting this thread it really pushed me to get this done, I'd been thinking about it for some time. Thanks to Lisa and Donna for the recommendation on Smart Powders, you saved me about $1000/year.

 

-David

David, thank you for beeing so accurate with some posts,not only here but in other discussions too.

We are all on the same wave, we are getting tubed right now and we don´t want to fall onto the wipeout, the end of the tube with the light is near, lets enjoy the tube while we are in it, maybe the wave keeps us on the tube longer but we will make it to the light with our kids (it´s called tandem, when you surf with someone else).

I am using 600mg daily and will raise depending on results, right now Juanito, my son is doing better for sure

 

Keep the faith your son will be better with this, be sure.!!

Best vibes for all parents trying so hard to make the difference.

JP.

Hi,I would like to know what's the dosing mg/kg for our kid,also what the different dosing Idebenone comes.

Does it make the difference with your kids? Thank you,

I'm just wondering if any of you have used Protandim and Idebenone together?  Baylor is now 7, and 40 Lbs.  We started him on Protandim when he was 2, and saw greater flexibility in his ankles.  We eventually stopped using Protandim because it was so hard to get it into him because of the taste.  I purchased Idebenone online from Swansonvitamins.com for a better price than most places.  It is in 180 mg. capsules.  I love the capsules because we can stir it into food.  I've tried once to give it to Baylor, but found it doesn't stir into some things very well. So I'll have to experiment some more.  It also doesn't taste bitter like Protandim, which makes it wonderful!  After reading this discussion, I've vowed to try to get it in him tomorrow.  He has a lot of sensory and rigid thinking issues, which has always made getting any type of supplement or meds in him a nightmare.  In the last 6 months he has lost so much strength.  He falls constantly, and is experiencing emotional breakdowns because of it.  He now tells me he's not strong anymore, and just sobs.  I'm so hoping Baylor shows improvement on Idebenone.  I'll keep you posted.  Oh, and I should mention that he has never been on Prednisone or Deflazacort, because he already has melt down issues.   His deletions are exons 8-9, just for information sake.  

Thanks all for the information!

Marla

The Idebenone I purchased from Swansonvitamins.com is ' PrimaForce '.  I think I paid $34 for 80 capsules.  I'm going to buy smart powders, as it seems to be a much better deal for how much we need to dose.  Great info, thanks again =)

 

Dear Naomi,

Do you give green tea extract to your son as well? If you do, please could you tell me where you order it from?

Do you think Idebenone can work even without steroides?

Thank you in advance for your answer.

Keren, mother of a 3.8 years old with DMD.



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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