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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Hope you are well,David.I am now in contact with Dennis.Apparently my emails to them were going to spam.Thanks and Good day.

Hi Juan,

 

Have you noticed and improvement since starting idebenone? You are definitely using the highest dose for weight.

JUAN PEDRO ARBULU said:

I am usig 600mg for 2 months 24 kg 6 1/2 years..no side effects, doing well but will jump onto 900mg soon.

Kirkman´s.

JP.



Amrit said:


David,

How old is your son? How long he is been on 900mg?

Did you notice any positive effects?

My son is 7.5 and we started about 4 months back with 150 mg and recently we strted giving him 450mg.

Thanks,

Amrit


David said:

Galia,

There is no firm dosage rule so every doc will have a different opinion.

According to Santhera trial, boys under 45kg get 450mg/day, boys over 45kg get 900mg/day. Parents on this discussion range from 150mg/day to 900mg/day.

My son just jumped from 180mg/day to 900mg/day with no ill effects (after 5 days).

-David

Hi Ofelia,

 

Juan is doing ok, not great improvement yet but I see him a little better (more force on gower´s maneuver, less effort) every week, please take in account that we started Deflazacort and Lisinopril with spirolactone one week before Idebenone so I really can´t assure much right now, I will increase to 900mg at the end of november so maybe then I will see a difference with this dose.

JP.

If you started deflazacort around the same time it would be difficult to say. Deflazacort alone should produce improvement.

JUAN PEDRO ARBULU said:

Hi Ofelia,

 

Juan is doing ok, not great improvement yet but I see him a little better (more force on gower´s maneuver, less effort) every week, please take in account that we started Deflazacort and Lisinopril with spirolactone one week before Idebenone so I really can´t assure much right now, I will increase to 900mg at the end of november so maybe then I will see a difference with this dose.

JP.

I agree.

Ofelia Marin said:
If you started deflazacort around the same time it would be difficult to say. Deflazacort alone should produce improvement.

JUAN PEDRO ARBULU said:

Hi Ofelia,

 

Juan is doing ok, not great improvement yet but I see him a little better (more force on gower´s maneuver, less effort) every week, please take in account that we started Deflazacort and Lisinopril with spirolactone one week before Idebenone so I really can´t assure much right now, I will increase to 900mg at the end of november so maybe then I will see a difference with this dose.

JP.

We started idebenone 4 days ago, 150 mg. Will increase to 300 mg in a week or so. Robert just turned 4 and weights 16 kg. I will post if I see any improvement during the next month or so. He's been on deflazacort for a while now so I can see if idebenone does something in terms of strength in the short run. I do not have high expectations in terms of strength based on what they see in the Santhera trial... hoping in some long term respiratory benefit.

I will be waiting for your input Ofelia.

Ofelia Marin said:

We started idebenone 4 days ago, 150 mg. Will increase to 300 mg in a week or so. Robert just turned 4 and weights 16 kg. I will post if I see any improvement during the next month or so. He's been on deflazacort for a while now so I can see if idebenone does something in terms of strength in the short run. I do not have high expectations in terms of strength based on what they see in the Santhera trial... hoping in some long term respiratory benefit.

I would like to know where can I buy idebonde? thank you

Here are some links to purchase Idebenone:

IDEBENONE
:: Kirkman ::
smart nutrition
Smart Powders

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.

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.

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.

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