Niagen. Does anybody take this? - Cure Parkinson's

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Niagen. Does anybody take this?

gingerj profile image
19 Replies

Reading earlier posts and reports online that suggest niagen raises depleted NAD levels which may help to prevent cell death. I was wondering if anyone in the group is taking it and if so how much?

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gingerj profile image
gingerj
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19 Replies
wifeofparky profile image
wifeofparky

I found this review on the product.

consumerhealthdigest.com/an...

Buyer beware

gingerj profile image
gingerj in reply to wifeofparky

Still reads like it could be worth taking

wifeofparky profile image
wifeofparky in reply to gingerj

Make sure the source is verified and you are not getting less Niagen than stated on the bottle.

1953bullard profile image
1953bullard

Niacin works just as well and is much cheaper

sunvox profile image
sunvox in reply to 1953bullard

Incorrect. That is the problem with the internet and this forum. Please do not post information like that without backing up your statement with science:

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cell.com/cell-reports/fullt...

scienceofparkinsons.com/201...

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hvmn.com/biohacker-guide/me...

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The original B3 - "Nacin is a water-soluble vitamin, which is also known as nicotinic acid or vitamin B3. Nicotinamide is the derivative of niacin and used by the body to form the coenzymes nicotinamide adenine dinucleotide (NAD) and nicotinamide adenine dinucleotide phosphate (NADP)."

lpi.oregonstate.edu/mic/vit...

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The new B3 - First the adds:

lifeextension.com/magazine/...

supplementpolice.com/nad/

vitamonk.com/blogs/health/w...

truniagen.com/science

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and then the science research that is building that shows the POSSIBILITY of NAD+ repletion to halt the damage done in Parkinson's. To date all the research is in cultures and animal models, but what researchers are finding again and again and in many different neurological disorders is that NAD+ repletion stops neurodegeneration, BUT a big piece of this improving message is that NR and NMN (which are both newly discovered NAD+ precursors) are Sirtuin activators where as the old Niacin and NAM were Sirtuin inhibitors.

Pending Human Clinical Trials not for PD:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

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Completed Human Clinical Trials:

nature.com/articles/s41514-...

researchgate.net/publicatio...

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Other research demonstrating protection in Parkinson's and other neurological disorders:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/258...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/256...

cell.com/cell-metabolism/fu...

cell.com/cell-metabolism/fu...

ncbi.nlm.nih.gov/pubmed/810...

sciencedirect.com/science/a...

pnas.org/content/early/2018...

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and no you don't have to take a B complex. A B Complex MAY help as well, but the research on that topic is altogether different and unclear.

Chsprat profile image
Chsprat in reply to sunvox

sunvox, have you seen any daily recommended Niagen dosages for PD patients? I've seen 1000mg in studies, but the recommended dosage on the bottle is 250-300mg 1x/day in the a.m. on an empty stomach. I've just begun taking Genex Nicotinamide Riboside 300mg...150mg/capsule, 2 capsules/daily dosage. Hoping Genex (on Amazon) is legit distributor. thank you

sunvox profile image
sunvox in reply to Chsprat

Hi C - No there is no research in humans directly related to PD. The 2 trials to date in heathy people both showed that Niagen increases NAD+ production logarithmically with increasing dosage up to somewhere around 300 mg but the increase in NAD+ production from 300 to 1000 mg per day was relatively small. The daily dose on the bottle is 2 pills or 250 mgs. I take 3 pills or 375 mgs a day.

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As is the case with most such supplements chances are patients would not feel or notice any change. What I think is a realistic hope based on all the existing research is that taking Niagen MAY improve cellular health and SLOW progression a tiny bit.

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Until such a time as a human trial for PwPD is run, I don't expect there to be much direct proof Niagen helps so taking this is more a matter of personal intuition and understanding of the underlying science.

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Based on all that I have read I believe Niagen is the second or third best supplement available to PwPD along with mannitol and thiamine and even though I do not have PD but rather SCA1, I will take all of them until such a time as they are proven ineffective even if I don't "feel" any difference.

Despe profile image
Despe in reply to sunvox

Can the dose be split in two, one pill am and the second one pm?

lempa_nik profile image
lempa_nik

Sunvox, for example, has posted a lot on this:

healthunlocked.com/search/n...

amykp profile image
amykp

I just started it. The only thing I've noticed (and it could be a complete coincidence) is that my nighttime leg and foot cramping has disappeared. It was after only three days of the niagen, which kinda seems too good to be true...so Im not believing it. Yet. :o)

felixned profile image
felixned

You should read Simon's post on this subject. It's recent, I think posted this month. I'll add the link later but you can find it yourself by googling scienceofparkinson .

aquario profile image
aquario

Have taken it for the last year. Haven't noticed much of a difference.

Jandeb profile image
Jandeb

I take 500 mg 2x per day I take quite a few supplements so it is hard to tell effects. Biochemically and from animal and human studies it supports mitochondrial function as well as healthy genetic expression. As most processes our ability to product NAD declines with age. Haven't seen any direct PD studies, but it is safe.

LAJ12345 profile image
LAJ12345

My husband has just tested positive for the double mthfr mutation that affects methylation. I have just been through his supplements again to see how they might affect this and have just read an article that says too much niacin including the riboside ie niagen can lead to undermethylation in someone who has this defect in their gene. He suggested if you have to take it you balance it with equal amounts of betaine (tri methyl glycine anhydrous) to supply the extra methyl groups otherwise it interferes with the methylation cycle, particularly in someone who can’t process b vitamins properly.

chrismasterjohnphd.com/?sfi...

ConnieD profile image
ConnieD in reply to LAJ12345

I have one copy of the mthfr gene, do you know if it’s true only for the double mutation? I’m confused, what would be an equal amount? An amount that equals say the amount in truniagen or do you have to counter b1 and all other b complex vitamins. I just saw a new neuro today and mentioned the mthfr gene he didn’t say anything. Every dr I see can never advise me on this. Do I need to see a hematologist or a geneticist? Yikes I’m worried

LAJ12345 profile image
LAJ12345

I think he says to take the same number of mg of the tmg and niagen. Or just don’t take it at all. Check if you are taking any extra b3 in a b multi too and add that to niagen amount to get the amount of tmg (anhydrous not HCl) To be honest I don’t think the Neuros are into this sort of thing. I think they look at it as a a bit of hocus pocus. Then these people on the internet who knows if what they say is true. So I would think it would be good to go by how you feel. If the niagen made you feel initially good but then you started getting really tired I would cut it back and see if you feel better. Add a tiny bit of tmg , maybe shake most of a capsule out at first and slowly increase it. If you start feeling jittery or hyper active it is probably too much. Anyway I am no expert but that is what I am going to try on my husband as he feels quite exhausted. I will drop it back to 1 instead of 2 x 125mg niagen, and I shook a tiny amount of a 750mg capsule of tmg into his mannose this morning. I am also going to stop his b multi as it is very strong and also has niacin in it, plus it has a lot of b6 which is also worrying me a bit after recent discussions on how it can cause neuropathy. He doesn’t take carbidopa, just mucuna so probably doesn’t need as much b6 and his multi b vitamin has about 50 mg which is way over the rda.

It is just the b3 you need to offset, not all the other b vitamins. The b3 grabs your methyl groups and binds to them and if you have a defective methylation gene you struggle to replace them. The betaine (tmg) gives up a methyl group so your body doesn’t have to struggle to find it elsewhere. Anyway that is what Dr John says. From what I have seen one defective copy reduces the ability to process by 30-40%,two defective copies reduces it by up to 80% so one isn’t quite as bad. I don’t think it would hurt to take a small amount of the tmg in any case as it seems to be used in much larger quantities ie grams for some purposes. But again I am not an expert, just trying to piece together information from everywhere with no way of knowing if it is true or not except by watching to see the effects on my husband.

2 hours later.....

Then I read this which sounds just like my husband.... ndnr.com/anxietydepressionm...

Then this. drrachelwyndham.com/pyrrole...

So not sure anymore 😕

ConnieD profile image
ConnieD in reply to LAJ12345

Thank you so much! You’re husband is so lucky to have you! I need an assistant to help me figure it all out! 😄 my degree was in business not science . I stopped taking b complex too after reading some postings. Mthfr really can have negative affects on the body. My first child was stillborn because of it but I didn’t know nor the dr until they eventually tested me and then they put me on blood thinners and methyl folate for my pregnancies. I tell the story just to share it seems kind like a serious problem but even my gp doesn’t have any advice. Even today when I asked the neuro he just shrugged. What happened to let me look into that and I’ll get back to you! Just venting but it’s a bit frustrating, I feel like we have to not just be an advocate that’s important for anyone but with PD you need to practically be your own dr too. Had I known I’d get this I would have taken more science courses!! I do really appreciate your response, thank you !😊🦋

Connie

LAJ12345 profile image
LAJ12345

I did chemistry but I don’t think it helps very much as of course we didn’t study these particular molecules, but I guess it helps having a science brain! I think neuros don’t have time to study everything, and they probably aren’t chemistry experts. Every patient is different too due to genetics and the root cause of their disease.

I have sent my husband for genetic tasting but also for urine analysis for amino acids, poo tests for fungi, bacteria and parasites, breathe test for gut function and sibo. We are going mid October armed with the results to a natural health specialist who has other Parkinson’s patients as I think the more knowledge over what may be the root cause the better. Then we can concentrate our efforts and money into that. Already with the DNA tests just in we can see he has the mthfr mutations hence the importance of the dietary changes and the methylated b vitamins.

He has also been on mirtazapine for anxiety and depression for years and I have been weaning him off those slowly as the side effects of those are fatigue and apathy which coincidently are also his worse Pd symptoms. I feel there is no point treating these symptoms if it is the drugs causing them! His anxiety and depression have improved a lot with the vitamins and diet change (no sugar, field food, gluten and less meat, more fish and Veges) and also the strict exercise regime and qigong every day so he doesn’t need the depression drugs any more but still we are reducing them by only a fraction each week. Also reducing stress where possible.

But I think the key is slow and steady changes , watch and wait. Also I make him journal positive thoughts every morning and rate the day with a score for mood and anxiety as he cannot remember how he felt a week, a month ago. I can see if his anxiety and depression are creeping up again and watch him. Before diagnosis he was on fluoxetine and mirtazapine and he became suicidal and nearly jumped under a truck and I had no idea. Now I make him tell me every day how he is and we have the mirtazapine that we can increase again as an emergency procedure but so far so good.

ConnieD profile image
ConnieD in reply to LAJ12345

You are an a amazing and supportive spouse! It sounds like a terrific plan! I can’t imagine anyone not improving a great deal with that kind of care and the fact you’re a nutritionist is another big bonus, your husband is a lucky guy!!

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