Co-enzyme Q10

[Ohitsstoppedworking]

Hi all,

Does anyone also on here take Co-enzyme Q10. This was suggested by the MND nurse, and if so what dosage is recommended? (other than that on the label)

[Ellie]

Did the nurse not suggest a dose for you John?

The issue with CoQ10 is that its bioavailability is known to be fairly poor (i.e. how much of it remains to be used by the body having passed through the gastric juices etc) so, not only does the formulation matter (syrup is best by far) but the oral dose can vary from 200mg or 500mg right up to 2700mg to 3000mg, as in the clinical trials.

Hopefully somebody taking it will post.

ALSUntangled reviewed MitoQ, a 'better' antioxidant, a podcast review and published review can be found Here

[Ohitsstoppedworking]

Hi Ellie,

yes the nurse said “We would advise taking no more than max dose 200mg twice daily” I took this as 400mg per day, but I will check with the nurse first. It does say take 1 a day on the box (200mg per tablet) so I was just wondering if anyone was on these and if so what dose. I am sure this will be different for any given individual anyway, but was hoping for some feed back.

[SallyAnnB]

I take CoQ10 on the advice of my consultant and he recommended 200mg per day.

[Ohitsstoppedworking]

I now have confirmation that the dose recommended by my consultant is 400mg in a 24 hour period ie 2 x 200mg tablets.

[LindaB]

I now have confirmation that the dose recommended by my consultant is 400mg in a 24 hour period ie 2 x 200mg tablets.

Any particular brand?

[Ohitsstoppedworking]

Any particular brand?

No the consultant didn’t recommend any particular brand but I have gone for Holland and Barrett’s own brand in the hope that they will have some form of quality assurance.

[Lynne K]

I have read all of you messages about being advised to take CoQ10. I know that it’s an antioxidant but why were you all advised? What did your neurologists say that the potential benefit would be? Thanks, Lynne

[Ohitsstoppedworking]

I have read all of you messages about being advised to take CoQ10. I know that it’s an antioxidant but why were you all advised? What did your neurologists say that the potential benefit would be? Thanks, Lynne

Lynne, the consultant was quite vague on this and cannot prescribe is as it doesn’t fall under the NICE rules I think. This is early stages for me so I still have a lot of reading to do, but I believe the possible benefits were born out of trials with Q10 at much higher doses.

[Lynne K]

Thanks from your rapid reply, Lynne

[Ellie]

I believe the possible benefits were born out of trials with Q10 at much higher doses.

The clinical trial for high dose CoQ10 in ALS was abandoned after Phase II showed “insufficient promise to warrant Phase III testing”. If anyone wants to read the trial report, I’ll post the link.

That’s not to say you shouldn’t bother taking the supplement (even) at 400mg per day for its known benefits but have realistic expectations re ALS.


Love Ellie.

[Ohitsstoppedworking]

The clinical trial for high dose CoQ10 in ALS was abandoned after Phase II showed “insufficient promise to warrant Phase III testing”. If anyone wants to read the trial report, I’ll post the link.

That’s not to say you shouldn’t bother taking the supplement (even) at 400mg per day for its known benefits but have realistic expectations re ALS.


Love Ellie.

Thanks Ellie, Iv been taking riluzole (1 tablet 50mg) for a month now and I’m waiting on blood test taken last week, but I’m getting quite bad fatigue. Iv tried to read lots of the post relating to this, but do you have any links that will give me an idea if this will pass, and if so how long it will take, as I’m considering stoping the only drug licensed to work, while looking at alternatives. I’m not saying I will stop riluzole for good, just while I’m still active. Currently only left arm affected.

[Ellie]

Ohitsstoppedworking See what the blood tests say before making any decision - any idea if only your liver function is being tested or if it's a full blood check, one vial or multiple? Hopefully it's full bloods, which may reveal vitamin/mineral defiencies, hormone imbalance etc. that can be addressed.

If the one Riluzole you take is during the day, you could take it at bedtime, but it took me about 3 months to get used to 2 tabs per day. If the bloods throw up no abnormalities, maybe give it another while if you can but don't feel despondent if you decide to stop taking it. Riluzole is no magic pill so, if you're so fatigued taking it, that has a huge impact on your emotional wellbeing and overall quality of life.

Given that you're 'minimally' affected by ALS currently, you could always try it again in the future - though it is recommended to start taking it as early into the diseaseas possible but, again, it's a quality of life balance.

Presuming your respiratory function is unaffected, look at the old reliables; your diet, hydration and sleep. Pace yourself too, know your limits and take rest periods.

My dietitian upped my calorie intake from the start - neurological conditions are energy gluttons - and I find vitamins D3 and B12 (as methylcobalamin) help my energy and mood.

Good luck xx

[Ohitsstoppedworking]

Ohitsstoppedworking See what the blood tests say before making any decision - any idea if only your liver function is being tested or if it's a full blood check, one vial or multiple? Hopefully it's full bloods, which may reveal vitamin/mineral defiencies, hormone imbalance etc. that can be addressed.

If the one Riluzole you take is during the day, you could take it at bedtime, but it took me about 3 months to get used to 2 tabs per day. If the bloods throw up no abnormalities, maybe give it another while if you can but don't feel despondent if you decide to stop taking it. Riluzole is no magic pill so, if you're so fatigued taking it, that has a huge impact on your emotional wellbeing and overall quality of life.

Given that you're 'minimally' affected by ALS currently, you could always try it again in the future - though it is recommended to start taking it as early into the diseaseas possible but, again, it's a quality of life balance.

Presuming your respiratory function is unaffected, look at the old reliables; your diet, hydration and sleep. Pace yourself too, know your limits and take rest periods.

My dietitian upped my calorie intake from the start - neurological conditions are energy gluttons - and I find vitamins D3 and B12 (as methylcobalamin) help my energy and mood.

Good luck xx

Ellie,

Thanks again, your comments are very much appreciated and I can see you unfortunately have a great deal of experience with this disease xx.

I think it is full bloods (I hope so they took enough!!) so I’m sure I will find out in due course, but you really hit the nail on the head with a link with fatigue and mood….it’s been getting me down a bit as it makes work difficult (physical job!!) and over a month ago I was running 10k 3 times a week, to now not running. Iv ran easier half marathons compared with trying to run 5/10k now!!!

I will take yours and the consultants advice and continue with the current medication until I have the blood results back and have spoken with the neurologist. 👍

[Ellie]

you really hit the nail on the head with a link with fatigue and mood….

Try vitamin D3 to improve your mood, it is one its benefits and I am convinced it helps me. xx