SoPD blog post from Simon on the recent r... - Cure Parkinson's

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SoPD blog post from Simon on the recent results from the NADPARK trial of nicotinamide riboside (Niagen)

jeffreyn profile image
47 Replies

"[Researchers] have found that nicotinamide riboside can increase energy levels in the brains of people with Parkinson’s in a small pilot study [NADPARK] and they are now testing this agent in a longer term study [NOPARK] to determine if it can impact the progression of the condition."

scienceofparkinsons.com/202...

The much larger NOPARK trial is not scheduled to complete until mid-2024. Rather than wait for that, I'm planning to buy some Tru Niagen to try for myself.

See also these earlier threads:

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

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jeffreyn profile image
jeffreyn
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kevowpd profile image
kevowpd

Good Intel Jeff. Expensive, but not outrageous. If it does something.

frown profile image
frown in reply to kevowpd

Where can I buy this product?

kevowpd profile image
kevowpd in reply to frown

Enter:

Truniagen 300

Into your regional amazon (amazon.com if you are in the USA)

jimcaster profile image
jimcaster

I agree with you, Jeff. Thanks to several posts by Sunvox (Joe Peck), I have been taking Tru Niagen every day since the Summer of 2018. healthunlocked.com/cure-par...

Bolt_Upright profile image
Bolt_Upright in reply to jimcaster

So Jim: You have been doing a n-of-1 trial for 42 months! Could you please share your results?

jimcaster profile image
jimcaster in reply to Bolt_Upright

Hi, Bolt! Ironically, you asked me more or less the same question 5 months ago when I posted about TruNiagen. Click the link on my comment above to see your question and my reply. Also, see my reply to Smittybear7 below.

Bolt_Upright profile image
Bolt_Upright in reply to jimcaster

Thanks Jim! That was a great answer "I don't feel like my PD has progressed at all in the 3.5 years since my diagnosis. That's a long winded way of saying I have no idea if TruNiagen slows progression...but even with the significant cost, I think it's worth trying because of stories like the one linked to this post. "

jimcaster profile image
jimcaster in reply to Bolt_Upright

I doubt that anyone else cares, but that's only part of my answer. I think the second part of my answer (which you copied and shared) has to be shared with the first part. I HOPE TruNiagen delays progression, but there is no way to know. I am always extremely skeptical about any claim that a particular supplement delays progression because (1) We have no way of knowing how we would be doing without a particular supplement, and (2) Most of us take so many supplements that's it's impossible to ascribe any perceived benefit to any particular supplement. The first part of my reply is more important to me than the second part which you shared. My ENTIRE reply was:

Hi, Bolt. One of the difficulties in assessing the effectiveness of any supplement is that it's impossible to know how we would be doing without it. I don't know how quickly I would be progressing without it. It's compounded by the fact that I take multiple supplements. Is it the B3, the B12, the B1, the D, the red light, the Neuroaspis, the butyrate, or the exercise? Finally, and probably most significantly, the progression of PD is normally so slow that it's unnoticeable from day to day, month to month, or even year to year, at least for me. Other than having foot dystonia about a year after diagnosis (which totally disappeared with Sinemet), I don't feel like my PD has progressed at all in the 3.5 years since my diagnosis. That's a long winded way of saying I have no idea if TruNiagen slows progression...but even with the significant cost, I think it's worth trying because of stories like the one linked to this post. 😊

Bolt_Upright profile image
Bolt_Upright in reply to jimcaster

Thanks. Sorry for putting you through that again. I am happy you are stable.

jimcaster profile image
jimcaster in reply to Bolt_Upright

No worries whatsoever! You didn't put me through anything. Actually, you may have inspired a future post encouraging people to take claims of slowing or stopping progression with a ton of salt. 😊

WinnieThePoo profile image
WinnieThePoo in reply to jimcaster

I fear your post may fall on stoney ground

jimcaster profile image
jimcaster in reply to WinnieThePoo

I share your concern and will likely skip it. If a simple request for kindness can be come controversial, I don't want to know what a request for caution and skepticism might engender.

VivaceLargo profile image
VivaceLargo in reply to jimcaster

Hi Jim,Thank you for sharing your full answer.

I always sit up and take note when Simon Stott reports in SoPD say a phaseII or III is starting. The scientist in me tell me to wait for the published results. As a PD fighter I think.... I don’t have the luxury of time to wait for the results! Do you mind my asking what dose of Nicotinamide riboside you’ve been taking ? Thank you

jimcaster profile image
jimcaster in reply to VivaceLargo

For the past several years, I have been taking 900 mg per day (Three 300 mg capsules). The study participants received 1000 mg/day.

jimcaster profile image
jimcaster in reply to VivaceLargo

I am also a big fan of Simon Stott. As a result of the Science of Parkinsons post which is linked below, I have been taking Neuroaspis. Again, I don't sense any particular improvement, but I hope it slows progression of Parkinson's Disease in the long run.

scienceofparkinsons.com/tag...

Fed1000 profile image
Fed1000 in reply to jimcaster

Hi Jim, I'm returning to Tru Niagen after tryng Nuchido (it increased my tremors, possibly due to being too energized). I have some questions for you, sorry: which B-complex are you using and what is your daily dose; you take Omega 3 only with Neuroaspis or even alone; what is your daily dose of Neuroaspis? Thank you very much.

jimcaster profile image
jimcaster in reply to Fed1000

I take 3 Apex Super Methyl capsules daily. I buy them from my chiropractor. See link below for ingredients and information. I take one serving of Neuroaspis daily because that's all that was given to patients in the trial referenced by Simon Stott. Here's a link to info regarding Apex Super Methyl:

apexenergetics.com/super-me...

Fed1000 profile image
Fed1000 in reply to jimcaster

Thanks Jim and sorry again, I can't find Neuroaspis in Italy and Europe. Where are you buying it?

jimcaster profile image
jimcaster in reply to Fed1000

Through Amazon. I'm in the USA. It might not be available in Europe, but maybe you can contact the manufacturer directly and have it shipped to you??

Fed1000 profile image
Fed1000 in reply to jimcaster

Thank you Jim, Neuroaspis is not available in Italy, but the producer can arrange a shipment to Italy directly from Greece.

Smittybear7 profile image
Smittybear7 in reply to jimcaster

Does it help with tremors dystonia,and dyskinesia?

jimcaster profile image
jimcaster in reply to Smittybear7

I don't think it alleviates any symptoms which already exist. I look at Tru Niagen and virtually all other supplements with the HOPE that it MIGHT delay or prevent the worsening of symptoms in the long run.

Smittybear7 profile image
Smittybear7 in reply to jimcaster

Thanks

Smittybear7 profile image
Smittybear7 in reply to jimcaster

Do you have any dyskinesia from the Carbidopa levodopa? What supplements do you think help prevent that?

jimcaster profile image
jimcaster in reply to Smittybear7

I don't have dyskinesia. I am not aware of any supplement which prevents it.

Smittybear7 profile image
Smittybear7 in reply to jimcaster

Thanks

alaynedellow profile image
alaynedellow in reply to jimcaster

I'm hoping Dr C was right he said B1 stopped dyskinesia👍

LondonPD profile image
LondonPD in reply to jimcaster

I have my husband on Tru Niagen 2 tablets every morning for the last month in his stack of supplements. Certainly no adverse effects and he is doing quite well. Any opinions on whether we should increase the dosage ? Thanks

jimcaster profile image
jimcaster in reply to LondonPD

Tru Niagen comes in 100 mg or 300 mg capsules. I buy the jars with 300 mg capsules and take 3 per day (900 mg) because it is close to the 1,000 mg/day given to the trial participants. Again, I don't expect any discernable improvement, but I hope it provides a long term benefit.

binnyrox profile image
binnyrox in reply to jimcaster

Hi JimReally appreciate your posts. Just checking - did you split up the 3 tabs Tru Niagen over the day or had it all at one go - single dose?

Also before or after meals?

Thanks much

jimcaster profile image
jimcaster in reply to binnyrox

Thank you. In the trial, they divided the doses in half, but I take it all in one. I usually take three 300 mg capsules first thing in the morning on an empty stomach.

Millbrook profile image
Millbrook in reply to jimcaster

Hi Jim, thanks for your feedback.

Perhaps the question to ask is, do you feel better with Tru Niagen than before?

Are you better than before?

And if you are not better, are you worse than before?

And if you are not better or worse, it means you are stable.

Stable is good.

My greatest fear is things going south.

My husband is better with PS 128+K21, Coronet Duo, B vitamins, 250 mg niacin, curcumin, Honopure. Have you tried PS 128? You can order it from wellbeingsg.com

They have a promotion buy 10 get 2 free.

I will also be adding micronised PEA to our stack when it arrives.

jimcaster profile image
jimcaster in reply to Millbrook

Thanks, Millbrook. I'd say I'm stable, which is fine with me. Red light coronet, neuroaspis, high doses of a B complex (particularly high in B2, B6, and B12) vitamin, high doses of B1 and Tru Niagen is what I have settled on. Those supplements, together with Sinemet, have made life quite normal for now. That is as much as I dare hope for.

Zella23 profile image
Zella23

Thanks for sharing this. Sounds like it’s shown some good results. Agree with above comments it’s difficult to know when taking many supplements which one helps. Not sure I’m adding it to the stack yet though.

Has anyone tried NMN from Do Not Age? I used two bottles of it at 1 gram a day. I then switched to Tru Niagin 750 mg a day and 250 mg of niacin. I have less energy than when I was taking NMN but I don’t know if that is why.

Millbrook profile image
Millbrook in reply to

Hi CC. Is it too much niacin? I thought we should not take more than 500 mg?

in reply to Millbrook

I believe NR and NMN are different in their dosing?

Feargaire profile image
Feargaire

I have not yet read the study but previous research has suggested that the vast majority is methylated in the liver for excretion....I wonder what % actually makes it to the blood plasma. In addition, I wonder how they measurs NAD levels given it's instability as it is constantly cycling between reduction and oxidation reactions

binnyrox profile image
binnyrox

Hi Went through your links and saw you made a comment

“(Hmmm, a combination of nicotinamide riboside and ambroxol???)

I’m curious - were you thinking of the normal dosing of ambroxyl or the high dose regimen ambroxyl?

Thanks much

jeffreyn profile image
jeffreyn in reply to binnyrox

It was Simon who made that comment in his SoPD blog post. Here is a link to the comment section of his blog post, if you would like to ask your question there:

scienceofparkinsons.com/202...

binnyrox profile image
binnyrox in reply to jeffreyn

Thank you very much for the redirect

ddartmouth profile image
ddartmouth

One of the studies was based on taking nicotinamide riboside as well as something called pterostilbene.

Do any of you take that in addition to the Tru Niagin?

Thanks.

healthunlocked.com/cure-par...

not so good comment from Michael

twitter.com/MichaelOkun/sta...

PDWarrior1900 profile image
PDWarrior1900

thanks for the good links!

PDWarrior1900 profile image
PDWarrior1900

by the way, i bought my nicotinamide riboside direct from China... 50 grams for $26.00 ... found them on Ebay (i hope this stuff is real ... LOL)

clinicaltrials.gov/ct2/show...

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