Nicotinamide

[PaulaF]

Are there any recent updates on nicotinamide or the experience of taking it?

Evidence suggesting a startling benefit in MND first began appearing several years ago, but as usual subsequent research into it appears painfully ponderous.

As it is an entirely natural substance and people with MND appear to have low levels of it, is there any reason for us to be hesitant about taking at least a moderate dose of it?

[Zante]

PaulaF I am not at all scientific but the link here gives an article on Nicotinamide.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8625820/

[Cinderella]

Hi PaulaF that's interesting - I used to work in an independent healthfood shop and remember Solgar's no flush niacin - the best form available and safer for the liver - inositol hexanicotinate? I haven't found anything online before your post about it helping mnd though. I have really low blood pressure so that might be an issue for me? It says not to take with Vitamin C.

Another possible I have only recently heard about are hydrogen pills or inhalation and am currently corresponding with someone in the UK about it. Have you heard about this?

I am signing up with a nutritionist to access therapeutic levels and correct dosages for supplements, but it is not cheap.

I asked the neurologist about taking ALCAR and whilst they wouldn't prescribe it, they said fine to try but they wouldn't help me with dosage. So I am following the published trial of 3 x 1000mg and spacing them 6 hours apart, one hour after taking riluzole night and morning and the other at mid afternoon. I was told that taking them with carbs is best but there are differing views.

Who knows if it is helping but my sister says I no longer look 80 (I'm 63 but most people thought I was in my 40s before this), the acupuncturist said she sees improvement in my mobility and calf size, my AV said I was looking really well and the respiratory said I was stable and would now lengthen the time between appointments. I am just trying to remain independent enough to be able to get myself washed/dressed etc. The trial was 48 weeks so I have a while to go yet.

It's just a shame we have to do this alone with no help or monitoring.

[Cinderella]

Hi Zante thanks for the link - I read as much as I could then skipped to the ALS section - this was published nearly a year ago but has anything happened since I wonder?

Are any of us tested for these levels? The only blood test I have is for the liver due to taking riluzole. I am going to ask as taking NADH isn't that expensive and could be of such benefit.

If I ever get to see that neurologist I will be bombarding him with questions!

[Zante]

Cinderella I also read the start and then skipped to the als part as it was a foreign language to me! I am only taking magnesium and vitamin b12 and multi vitamin supplement but wonder if I should be doing some research and taking more. Its a struggle to understand some things and to know what might be beneficial.

[Christopher]

Zante Cinderella PaulaF

There is a clinical study with 300 patients with a planned completion date of October 2023

https://clinicaltrials.gov/ct2/show/NCT05095571

There are of course a number of other studies around in this area.

Having been involved in clinical trials and such like for the last 35 years what I will say is that you can have a clinical paper that proves something beyond doubt. It can then take decades for the medical fraternity to change existing practices.

A very good example of this is something that is used in 90 percent of heart valve cases in the UK which means out surgical site infection rates are about one quarter of those in the USA for the same procedure. Its just because they have always done it that way in the USA.

[denise]

I think I've said it before but I buy supplements and then I'm tempted by another and I end up with a row of little bottles and cant recall which is what. Then I go through periods of forgetting to take them. Then I have no idea if something is helping. Most end up getting thrown out then I'm tempted again. I'm taking magnesium, mixed vitamins and b12 if I remember 😳

[PaulaF]

ALCAR and nicotinamide seem to function in a similar way by stimulating the transport/absorption of nutrients. There are several pieces of evidence suggesting they work to some degree and nothing I can find to suggest they don't.

After spending millions on cutting-edge research, I suppose it might be uncomfortable for the medical/pharmaceutical establishment to consider that MND might be treatable as a simple vitamin deficiency open to remedy outside of the control of doctors.

I suppose the only issue is whether large doses might have some other adverse effect.

[PaulaF]

Tried it initially at the tested high dose. Felt numb around the mouth and very woozy, so continuing it at a much smaller dose.