A great day for Ataxia and other disorders. - Ataxia UK

Ataxia UK

4,090 members4,663 posts

A great day for Ataxia and other disorders.

sunvox profile image
10 Replies

I have long lamented the fact that little research was likely to happen if there was no money to be made. Well, today I have been proven wrong. A university in the Netherlands is planning a double blind placebo controlled clinical trial of Niagen. The study is in patients with Parkinson's but really seeks to understand how Niagen may impact NAD+ and how that may be beneficial in slowing the progression of the disease. Enhancing NAD+ and Sirtuin activity is something that could help slow many neurological disorders including many forms of Ataxia. This would not be a cure, but rather an inexpensive and safe way to slow progression. In the study they propose to administer 1000 mg per day of Niagen to 200 patients with early Parkinson's. I should note that the title of the study says only "nicotinamide" but the summary explanation makes it clear the researchers are studying nicotinamide RIBOSIDE. They are not the same thing. Nicotinamide is known in short hand as NAM. Nicotinamide RIBOSIDE is known as NR. NAM and all other forms of vitamin B3 EXCEPT NIAGEN are Sirtuin INHIBTORS. NR or Niagen is the ONLY form of vitamin B3 that ENHANCES Sirtuins in the brain.

-

Anyways, like I said. Great day for Ataxia.

-

clinicaltrials.gov/ct2/show...

-

"Parkinson's disease (PD) is a major cause of death and disability and has a worldwide socioeconomic impact. It affects ~2% of the population above the age of 65 years and its prevalence increases dramatically as the population ages. The etiology and molecular pathogenesis underlying PD remain unknown. Recent evidence has implicated an impaired neuronal metabolism due to mitochondrial dysfunction, in particular NAD-deficiency is a key-event in the pathogenesis of PD. We propose that in order to correct this metabolic defect and treat PD, we need to boost neuronal NAD levels. This would improve mitochondrial function and could slow PD progression. Nicotinamide riboside is a precursor NAD vitamin. In this study we will investigate if nicotinamide riboside supplementation will correct NAD deficiency and thereby slow progression of PD symptoms. This study will recruit 200 patients with newly diagnosed PD and randomly assign them in an 1:1 ratio to either nicotinamide riboside or placebo administration for 52 weeks. During this trial the investigators will determine if nicotinamide riboside delays PD disease progression measured by clinical monitoring tools (MDS-UPDRS). Patients receiving nicotinamide riboside supplementation will receive a daily dose of 1000mg for the duration of the trial. This trial will also collect biological material from participants to see if nicotinamide riboside supplementation rectifies NAD deficiency and metabolism deficiencies."

-

-

Now if only we could convince the researchers to add mannitol or trehalose, we would REALLY have something :D

-

Cheers,

Joe in NY

Written by
sunvox profile image
sunvox
To view profiles and participate in discussions please or .
Read more about...
10 Replies
gaga1958 profile image
gaga1958

hi

I've been using niacinamide but how do I determine if its NR or NAM?

I dont see that on the label.

thx c

sunvox profile image
sunvox in reply togaga1958

Hi Chris,

Niagen is only made by Chromadex as they hold the patent and is always called Niagen not niacinamide. If it doesn't say Niagen, it is another form of B3. Also Niagen is relatively expensive at about $30 for 60 pills of 150 mg. There is another company that sells something called Basis that is a combination of Niagen and pterostilbene (pterostilbene is a known super enhancer of Sirtuins in the same category as resveratrol, but many times more bioavailable than resveratrol). They are in a patent lawsuit with Chromadex, but so far are losing.

gaga1958 profile image
gaga1958 in reply tosunvox

too bad pterostilbene increases the LDL level, which mine is already too high.

such an odd affect

gaga1958 profile image
gaga1958 in reply tosunvox

the bottle doesnt even get a whole month's worth if you're trying to get to the

1000mg level.

gaga1958 profile image
gaga1958 in reply tosunvox

sorry for so many replies. I thought this was interesting although you probably already know, maybe others dont. I wondered how CoQ10 differed from Niagen since they both affect cellular energy. I ask Tru and this was their reply----

" You asked a good question. NIAGEN® works by providing a substrate for NAD+, a transport molecule that carries output from the Krebs Cycle to the Electron Transport Chain. This occurs inside mitochondria. CoQ10 as ubiquinone or ubiquinol, is another co factor used to transport electrons and, as such, contributes to cellular energy production.

Although all both of these supplements are used to increase cellular energy production, they operate through different mechanisms of action, and therefore can be used in tandem to provide a synergistic benefit, without creating redundancy."

Stanleyclan profile image
Stanleyclan

Morning Joe! Happy Sunday 🌞 Would you say.....if you had to choose.....Niagen, pterostilbene and trehalose would be your top three supplements? Have you re assessed your dosage at all after this? Chris made me sign him up for another marathon next year as his running has lapsed lately. His balance isn't great and he gets really tired....we both hope the marathon training will re focus him! 😁

sunvox profile image
sunvox in reply toStanleyclan

👋Hi Stanley Clan,

Yes, those would be my top 3 There is a man who has Huntington’s Disease which is also a polyQ disorder and he is more than a decade past the point where his mother felt symptoms and all he takes is trehalose pterostilbene and CoQ10 which as ChrisZ pointed out is similar to Niagen in its theoretical role, but he takes 3 Tbs a day of trehalose.

-

Also I would repeat my earlier comment on exercise and add that there is some evidence that marathon training accelerates degeneration in Ataxias. I continue to believe there is something about using a treadmill that helps balance training and I believe 3 times a week of 30 minutes at 80-85% max heart rate followed by squats with weights and leg lifts is critical to my maintaining zero progression.

Finally I would add that of all the supplements I take only the newest one has actual human clinical data showing that it MAY slow the progression of Ataxias and that supplement is lithium. Just FYI 😀

Cheers,

Joe

I have a fruend with Friedrich’s ataxia, is Niagen something that would help in his situation? I am new to the different forms of ataxia, and just trying to understand. I actually came across niagen doing a deep dive into looking at nutritional supplementation to help my very depressed husband. He is doing well now, but it’s interesting to see this in possible relationship to my friend with FA.

sunvox profile image
sunvox in reply toMynameisinigomontoya

Love the name. "you killed my father . . . prepare to die" :D

Niagen is an all around cellular booster so my opinion would be, it certainly couldn't hurt and it might help slightly. I would mention that there is woman who has FA and maintains a blog. She found that thiamine helped her FA tremendously, and there have been several research reports indicating thiamine may help people with FA. I will try to find the links later.

As to your husband and depression, I recently did some searching for my daughter and found that lithium and fish oil topped the list of supplements with some scientific evidence of helping. I will add that I started taking lithium myself recently, and although I have nothing factual to say, I just feel like I'm sleeping better and have an overall feeling of improved well being. I really can't describe it, maybe the best way to put it is to just say I feel more "up". I am only taking a tiny 5 mg per day.

Cheers,

Joe

sunvox profile image
sunvox in reply toMynameisinigomontoya

Found the link: fafysio.wordpress.com/2016/...

Not what you're looking for?

You may also like...

Clinical trial of Niagen for treatment of a neurological disorder.

So yesterday while just doing a general search I came across an old bit of news and a new clinical...
sunvox profile image

Another study supporting Niagen for Ataxia.

Nicotinamide Pathway-Dependent Sirt1 Activation Restores Calcium Homeostasis to Achieve Neuro-...
sunvox profile image

Trehalose and nicotinamide riboside as treatments for ataxia

Dear All We understand completely, the frustration at having to wait for science to take its course...
SueMillman profile image
Partner

My progression is stopped for now. Here's my regimen update 1. How I stopped SCA1.

My name is Joe Peck. I am 52 years old and in 2013 I tested positive for the SCA1 mutation with a...
sunvox profile image

Moderation team

See all
HarryB profile image
HarryBAdministrator
VE93 profile image
VE93Administrator
WendyBom profile image
WendyBomModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.