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It seems that Idebenone is not available online!I don't know if this news considered good or bad!

Good if it will be approved,bad that we can't buy it!

Any new ideas,please?!

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Hello Every one , I just got 4 bottles ( 150 capsules each ) of Idebenone last week from Kirkman .One of
the other parent whose son is recently diagonised with DMD wanted for his son , so I just checked for him and search results did not show any Idebenone on kirkmam's site , so I have just written a mail to Kirkman inquiring abt Idebenone .Lets see what they reply .My son was 4.6 yrs old when we started him on Idebenone in Sept 2011 ,In last one year we weaned him from 150 mg to 600 mg and he shows some very positive signs .His fatigue levels have decreased , he can walk continuously for appx 45 mins , can climb stairs holding the side railings .All these activities , he could do earlier , but at very slower rate .All credit goes to Naomi - Joshua's mom for guiding us as what dosage to start with and how to increase the dosage slowly .She really guided us well , for which we are extremely obliged to her.

.With regards to Idebenone , i consider her my guru and I will follow her in case Kirkman has stopped supply .

I agree with her it's all (dirty) politics

Ambrish
Just forgot to mention , my son Khush at age 5.6 yrs is still not on any steroids

Ambrish

Kirkman still sells Idebenone. See my previous message. You can order by phone.

Ambrish Kapadia said:

Hello Every one , I just got 4 bottles ( 150 capsules each ) of Idebenone last week from Kirkman .One of
the other parent whose son is recently diagonised with DMD wanted for his son , so I just checked for him and search results did not show any Idebenone on kirkmam's site , so I have just written a mail to Kirkman inquiring abt Idebenone .Lets see what they reply .My son was 4.6 yrs old when we started him on Idebenone in Sept 2011 ,In last one year we weaned him from 150 mg to 600 mg and he shows some very positive signs .His fatigue levels have decreased , he can walk continuously for appx 45 mins , can climb stairs holding the side railings .All these activities , he could do earlier , but at very slower rate .All credit goes to Naomi - Joshua's mom for guiding us as what dosage to start with and how to increase the dosage slowly .She really guided us well , for which we are extremely obliged to her.

.With regards to Idebenone , i consider her my guru and I will follow her in case Kirkman has stopped supply .

I agree with her it's all (dirty) politics

Ambrish
Thanks Ofelia for the information .

Ambrish

Seems like Smartpowders can deliver again, I just ordered from them for my son.

Thank you for all the information. Evan has an appointment and I am going to talk to hid Doctor. Do you think his Doctor will direct us on how much to start him on and how to increase it over time?

Joshua's mom said:

If you search Idebenone on the site, it will bring up a lot of discussions!  Joshua has been on it for the past, almost 3 years.  He is 9 years old, 65lbs (but not overweight), and also on deflazacort.  His neurogeneticist was the one who recommended it just as it came into phase II of the clinical trials.  I will add the links I have for it below.  The dosage was recommended to be up to 950mg per day, but to wean up like you would a medication.  I has made big a big difference!  We would increase it without telling the physiotherapist, just to see if she could see the difference, and within a week of the increase, she would call us.  His legs don't harden like they did before, he had the start of scoliosis - which has disappeared, and his respiratory testing is considered remarkable.  Do your research, as we did ours, before starting anything.  Joshua is 9 years old, still riding a bike and running just like his friends.   

IDEBENONE
:: Kirkman ::
Fact sheet - Catena (idebenone) - Health Canada
smart nutrition
Idebenone next generation CO Q10 for heart circulation brain depres...
Search of: idebenone - List Results - ClinicalTrials.gov
Smart Powder
Idebenone description
Idebenone Benefits | LIVESTRONG.COM
Smart Nutrition Shop: Idebenone
gelcap.sizechart.pdf (application/pdf Object)

We started with 500 mg, weaned him up in steps to that. It is the amount that has been used in previous studies. We will increase the dosage from 500 mg within next year, probably up to 700-750. He is 5 years old, soon 6.

Hi Denise,

Joshua's neurogeneticist, who had recommended idebenone, suggested we start at 150mg and work our way up as needed.  "As needed" is when he would start to plateau.  He would start complaining of his body not working the way he wants it to; his calves would start to harden and bulge; he would start using a slight Gower's; or he would start complaining about not keeping up with his friends.  We would increase it another 150mg.  Treat it like a medication!!!!  Joshua is at the 500mg mark and has shown no sign of needing more since his last increase 6 months ago.  Once he does, we will increase another 150mg.

Take care,

Naomi


Hi,
We just started with idebenone which we order before four months from kirkman. Our son is just turned 2 years and last three months we gave him qoenzime q10 (50mg daily) and now we switched on idebenone ( 45mg daily). But Now I see there is no idebenone on line from kirkman so I would ask all of you which supplier you suggestion to continue with idebenone ?
Thanks in advance,

Marija

Kirkman still carries it, but not online.  I called them a few weeks ago and ordered a large supply... :)

Keith

Dalibor Randjelovic said:


Hi,
We just started with idebenone which we order before four months from kirkman. Our son is just turned 2 years and last three months we gave him qoenzime q10 (50mg daily) and now we switched on idebenone ( 45mg daily). But Now I see there is no idebenone on line from kirkman so I would ask all of you which supplier you suggestion to continue with idebenone ?
Thanks in advance,

Marija

We use Smart Powders. They stopped selling Idebenone in capsules, they started selling it in bulk instead after not selling it at all for a while. All you need is the powder and a digital scale to get the exact weight.

/David

Dalibor Randjelovic said:


Hi,
We just started with idebenone which we order before four months from kirkman. Our son is just turned 2 years and last three months we gave him qoenzime q10 (50mg daily) and now we switched on idebenone ( 45mg daily). But Now I see there is no idebenone on line from kirkman so I would ask all of you which supplier you suggestion to continue with idebenone ?
Thanks in advance,

Marija

Hello,

We have decided to start Evan on idebenone and received the rx. He is starting him on 500mg a day. I was a little suprised to see this amount. I thought it would be lower and then increase over time. We have not started him on it yet. Could you give me your input? Also I believe that I have to get the powder and empty capsules...am I correct? Any advise on stating this would be helpful

 

Thank you

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