Idebenone

Edit (Mar 2023): I’ve switched to taking Thiamine pills (100mg 4x per week) as they are significantly cheaper than twice-weekly injections. (I will continue taking CoQ10 daily too). I did blood tests to measure B1 levels before the switch, and two months after, and B1 level was maintained. I’ll keep assessing my own fine motor control about every four months. It deteriorates (that’s to be expected with FA); but I believe that deterioration is remaining slow.

Edit (Jan 2017): I no longer take Idebenone. It just got too expensive. As of Jan 2017 I’ve switched to taking a daily dose of CoQ10 (an over the counter antioxidant) and begun twice weekly intramuscular injections of vitamin B1 (Thiamine). It’s been shown in a trial in Italy to have protective effects on fine motor control (published results here). Nobody will prove this via clinical trial as vitamin B1 can’t be patented so there’s no potential income which would recover the cost of such a trial. I plan to track my own fine motor control via timed tests every four months or so.

I take Idebenone, as do many FAers, but I take it in the knowledge that neither functional nor neurological benefits have been proven via clinical trial (and there have been many trials). However, it is a powerful antioxidant and therefore, good for “mopping up” free radicals (which can do more harm in an FAer than in others); and there are anecdotal reports ascribing benefits to Idebenone, including heart-health and less fatigue (normally a symptom of FA).

If you take Idebenone, or want to, I recommend strongly that you source it from Smart Powders (click here) or Kirkman Labs (click here). Both are suppliers accredited by FARA in North America who test the quality and purity of their product before putting it into capsules.

When clinical trials have been done, dosage has ranged from 10mg/kg/day up to 50mg/kg/day. I couldn’t recommend a dosage but I would recommend that whatever dosage you’ll take, start much lower and build up over at least eight weeks to your ongoing dose. I’ve been advised that Idebenone breaks down in your system so it’s better if you divide your dosage and take in three or even four administrations per day. Also, it’s supposed to absorb better if you take it with something fatty like yoghurt or at mealtime.

For the first time, I had a shipment stopped at customs recently and they asked for more information on the contents. I sent them the following note (click on the links for the attachments):

“The chemical formula for Idebenone is C19H30O5. I attach a visual reference of its chemical structure. Idebenone is an anti-oxidant similar to the better-known CoQ10 which is widely available here in Australia. I have Friedreich Ataxia (FA) and it’s been recommended to me to take Idebenone instead. I attach a copy of a study that compares the two with reference to FA. Smart Powders supply FAers around the world with Idebenone and they work closely with FARA in the USA to ensure they test every batch. I attach a copy of a sample result from a past test they’ve done.

If any further information’s needed, please let me know immediately, by email or by phone…”

… and the shipment was passed straight away.