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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jajaja...I have some too so if you find something strange let me know please.

 



Ofelia Marin said:

Hmmm, this sounds fine. Someone posted on FB that it is shipped from CA but produced in China. Mine did come from California indeed. We should probably call them and ask...I have an 1 yr supply so I either take it myself or continue to give it to Robert. :)

JUAN PEDRO ARBULU said:

http://kirkmanlabs.com/Pages/1/AboutUs/

 

Let me know what you think.

Ofelia Marin said:

I did not think to check this before now. is the Kirkman brand produced in China. I usually do not trust the medication produce there.

 Hi,

I got my shipment ( Of IDEBENONE) through SMART POWDERS. Just wanted to check if anyone else getting IDEBENONE from SMART POWDERS.

Raktim,

Yes I too get my IDEBENONE from Smart Powders.

-David

What the dosing of Idebenone ? for a boy weighing around 68lbs.

Hi Djamel,

 

My son weighs 68lbs as well. His neurogeneticist said he can have up to 900mg per day.  We're weaning him up to that.

they use 450 mg/day for boys <45 kg and 900 mg/day for >45 kg in the Santhera trial.
boys in that trial are 10-18 years old if i remember correctly.

 


djamel fathi said:

What the dosing of Idebenone ? for a boy weighing around 68lbs.

Hello everyone. Just thought I'd share some results with you recently obtained.

My son Joe had been taking 180mg/day of IDEBENONE for 5 years. He is 13 and non-ambulatory. In late September of 2011, prompted in part by this discussion, we upped his dosage to 900mg/day. We have seen no side effects. Last week was our most recent visit to his pulmonologist and the first time Joe had taken a pulmonary function test since starting on the higher dosage.

His results were encouraging. His lung function improved, albeit a small amount, approx 5% above last reading in May 2010. The doc explained that at his age, lung function should be improving since his lungs are getting larger. But typically a steady reading is taken as a positive development, so 5% above was a pleasant surprise.

Was it the increase in IDEBENONE that led to this improvement? We'll never know for sure of course. But it's good enough for me to continue with the dosage.

I'm surely not going to wait for Santhera to finish their study in any event...been running for many years and nowhere near complete.

Thanks david for sharing..Which particular test showed 5% improvement?

Joshua had a respiratory test done last month.  We recently received the letter the respirologist sent to all the doctors involved.  First off, we upped his Idebenone to 500mg last fall.  His report reads the follows:

"The physical exam was entirely unremarkable.  Joshua performed excellent respiratory manoeuvres on spirometry.  His vital capacity and FEV1 remained above predicted normal limits (125 and 118% of norm, respectively).  Maximum mid-expiratory flow is also normal at 93% of predicted.  Oxygen saturation in room air was 97%, enditidal CO2, 36mm Hg."

Everything has increased for the better since he's started Idebenone!

naomi, does the increase in the idebenone dosage correspond with his weight? how much does he weigh now?

Amit,

I'm not 100% sure what the name of the test was which showed 5% improvement. It's the one where he blows into a tube as hard as he can and a device on the other end measures the strength and volume.

-David

Hi everyone,  My son also showed improvement in his FEV1, it was on the decline over the last 3 1/2 years but this time after taking Idebenone for about 3 1/2 months at 900 mg it jumped back up to 96.4%.  and his FEV1/FVC% rose to 103.3%.  it had dropped in june of 2011 to FEV1 at 92% and his FEV1/FVC% WAS 84%.   To me that is a 20% increase in FEV1/FVC%.   We will conntinue taking idebenone. 

 

Also we may want to look into who much B vitamins we are giving our sons.  I am going to start my son on a combination of B vitamins including B6, B12, FOLIC ACID, THIAMIN, RIBOFLAVIN, NIACIN, BIOTIN, PANTOTHENIC ACID, CHOLINE and INOSITOL.  I am also going to start him on a regimen of amino acids.  from what I have read in alot of the studies on muscles, they say if you can increase glutatione in the muscle, it can help the muscles during stressful times to increase glutathione, help reduce oxidative stress,  and help the bodies abilty with methylation and help with oxygen in the muscle cells so instead of losing oxygen in the muscle cells it will increase muscle oxygen and then in turn create more energy in the muscle cells.  what do you all think.  has anyone else heard or known about the B vitamins and amino acids?

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