A while ago a doctor offered to prescribe metformin for me for PD.
I have just started researching this as a possible alternative to other diabetes drugs.
Are any of you taking it for PD off label or for Diabetes?
Thank you
Metformin for Parkinson’s? : A while ago a... - Cure Parkinson's
Metformin for Parkinson’s?
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63 Replies
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Metformin is known to promote longevity.
Studies have shown that anti-diabetic drugs promote neuronal survival, affect brain metabolism and nerve inflammation and regeneration, and lead to improved memory and cognition.
If you decide to use it keep an eye on your B12 levels:
Long-Term Metformin Use Linked with Vitamin B12 Deficiency
endocrineweb.com/news/diabe...
in reply to park_bear
Well that would be one possible step forward and one definite step back wouldn’t it. Thank you park bear
When I went on Metformin a few years ago I was already on B-12 and that was a concern for my GP. She want to make sure my numbers stayed up.
I am interested. Any dosage recommendations?
Berberine is normally dosed at 500 mgs three times per day when used for diabetes or PD. Berberine increases levodopa production in the gut which is converted to dopamine in the brain. As such, it may be necessary to adjust C/L dosing downward to balance dosing and reduce the chance for dyskinesia.
Art
in reply to chartist
If berberine increases levodopa production in the gut which is then converted to dopamine in the brain, is this increased levodopa production increasing dopaminergic neurons survival? Wishful thinking probably? Berberine sounds excellent but not neuro protective, correct? Much like how macuna (velvet beans) are great but now protective?
chartist in reply to
ccl,
I thought I answered this yesterday.
Yes, berberine is likely to have neuroprotective effects via its antioxidant potential, but it is not in a class with melatonin when you are talking antioxidant and radical scavenging potential. Add to this the fact that melatonin is already known to protect DA neurons in the Substantia Nigra pars compacta and mitochondria throughout the body and it is my contention that the reason it can take PD one to two decades to fully manifest is because melatonin is doing its job so well until it declines with age and even more so with PD and is no longer able to abate the excess oxidative stress and inflammation inherent in PD.
Melatonin is made in the body to do all of the jobs that you continue to look for a myriad of supplements to do instead and are not native to the body. These supplements are highly limited when compared to the broad spectrum of whole body protective effects that melatonin is.
The question you should be asking is how do we ramp up melatonin production in the gut so it can do exactly what it already is proven to do so well, but can no longer do because of declining production with increased age and even further decreased production in PD! The answer is not melatonin supplementation.
Art
in reply to chartist
Thank you for restating and clarifying. I wanted to understand if the neuro protection of berberine is solely bc of its antioxidant potential or if additionally the increased levodopa production in the gut aides in neuro protection which I am gathering it does not. I am taking melatonin and have been since first reading about it here on HU. I have increased my nightly dosage to 20-25 mg for a few weeks now.
All of my searching is not for “instead of” melatonin but an “in addition to” melatonin.
How do we ramp up melatonin production in the gut? If the answer is not melatonin supplementation as you say it is not then I’m at a loss.
I do not mean to pepper you with questions you’ve already addressed. Ive learned from you what melatonin can do and how important the supplementation is but I need to reread everything I guess bc “the answer is not supplementation” is confusing to me.
chartist in reply to
Hi ccl,
Yes, you caught me in a moment of frustration. 😒😒😒 Forgive me please!
I wrote about it around three weeks ago. It is theory, but the existing science seems to support the idea of what I describe as a "positive repetitive pro-health cycle that exists between the 3 predominant short chain fatty acids(SCFAs), acetate, propionate, butyrate and melatonin in the gut.
The SCFAs increase melatonin and melatonin receptors in the gut. Melatonin increases bacteria that can interact with prebiotics and fermentable fiber to make more SCFAs which then make more melatonin and melatonin receptors which make more SCFA producing bacteria in a continuous pro-health repetitive cycle that leads to a rebalance of the gut microbiome toward a more healthful bacteria balance that is in direct contrast to the anti-health cycle of oxidative stress and inflammation that feed off of each other in a continuous repetitive cycle that lead to gut dysbiosis, ill health and disease.
Increasing SCFA producing bacteria and fermentable fiber and prebiotics should stimulate the pro-health cycle of SCFAs + Melatonin. What happens in the gut does not stay in the gut and these healthful gut changes should ultimately exert its positive effects in the brain through the gut /brain axis and possibly the vagus nerve.
This process should be able to work without melatonin supplementation, but melatonin supplementation shouldn't hurt.
When FMT is applied to the gut, three of the things it causes is the up regulation of SCFA producing bacteria, SCFAs themselves and melatonin! What a coincidence! My intent is to see if we can replicate the currently unavailable FMT for PD effects without FMT. I wrote about this here:
healthunlocked.com/cure-par...
It is more involved than I described above, but that was the easy to understand version and does not go into how butyrate and melatonin help repair the mucosal barrier and melatonin can reduce gut inflammation and oxidative stress to help shut down the oxidative stress/inflammation cycle. Both also improve gut permeability which is another inflammatory process.
Art
in reply to chartist
Thank you ArtI understand now
You may find researching how ketones affect the gut biome and brain to be of interest. As I recommended a few weeks ago, Dr. Nick Norwitz has great info on this and an interesting personal back story.
I’m circling back to my initial inquiry and intention.
Does Berberine have neuro protective benefits ?
Are they beyond it just being an antioxidant?
Yes, it does. It is a DP44 inhibitor. Metformin is also DP44 inhibitor.
chartist in reply to
ccl,
ncbi.nlm.nih.gov/pmc/articl...
tandfonline.com/doi/pdf/10....
The point I was trying to make was to stimulate the bodies own natural repair mechanism in a similar way to FMT as FMT has obtained the best results when compared to any other adjunctive treatments, by a wide margin.
Art
in reply to chartist
Understood and appreciated. The disconnect was that this although valid and important, info did not answer my question thus the confusion.
As far as “bodies natural repair system” goes, you can’t say that Art without my repeating yet again that what happens to our guts and brains in the absence of gluten and sugar is fascinating and very much related to your interest in our bodies capacity to naturally repair itself.
chartist in reply to
ccl,
I have not as yet heard for myself that anyone has been able to do what FMT does for PD via different diets. While it could be easily said that what I am describing is a diet of sorts, the intent is to try and replicate what FMT does without having to do FMT because FMT has shown improvement beyond anything else so far. It appears to be the best unavailable option for PD unless you do FMT outside of your doctor's office.
These are three things that FMT specifically does :
1. It increases SCFA producing bacteria.
2. It increases SCFAs.
3. It increases gut melatonin levels.
All three of these are low or depleted in PD. In the FMT/PD study they only gave one dose of less than 2 ounces of the transplant at the very beginning of the 12 week study, yet the participants improved steadily over the 12 week study period. This to me says that the FMT activated some type of repair cycle that continued to work beyond the first day. This is specifically what I am after and I feel that those 3 listed above are the key based on the current science. Yes, more studies would be nice, but they are far and few between for the good studies and I feel that in the case of PD, time is of the essence and what I am suggesting is safe and is exactly what a healthy gut would be doing to maintain itself.
Art
in reply to chartist
I didn’t say that the FMT can be replicated with diet. Never said that. I’m not disputing what you are saying or even talking about FMT or melatonin. Regarding your next comment,yes, correct, a healthy gut biome manages to work with gluten and sugar but the point is when it doesn’t which is common.
So, I’m going to move on now. The doctor I suggested can obviously explain this much better than I.
Thank you
in reply to chartist
Did you look at the work of Dr. Suskind that I posted in the other thread? He uses both FMT and the SCD (for Crohn's, etc), and has had excellent results with the SCD alone. That is to say, perhaps in his work, or even speaking to him, you may find something helpful to your investigation.
ETA: I can't recall what modifications he has done to the SCD
chartist in reply to
ccl,
Regarding gluten and sugar, a healthy gut biome somehow manages to be able to work with these two that often show their ill effects with age, when melatonin and SCFAs are in decline.
Art
ccl,
If you decide to go with Metformin, you might talk to your doctor about either monitoring your B-12 level or having you supplement B-12 as Metformin has a tendency to reduce B-12 levels and more so in some people and in rare cases has resulted in anemia or low red blood cell counts.
In one study, Berberine was shown to have similar effects to Metformin.
You might be interested in this :
healthunlocked.com/cure-par...
Good luck and keep us posted, ccl!
Art
in reply to chartist
Thank you Art! Unfortunately the subject of what to take, not take, side effects etc really revs up my anxiety which reduces my comprehension. I will definitely research bernerine. At one point I had read that one should not take it for an extended period perhaps that is due to the B-12 deficiency risk.
Try berberine. Thorne is the one our naturopath recommendednz.iherb.com/pr/thorne-rese...
Hubby used it for bacterial issues in the gut, rosacea and acne.
He took 1x twice a day for 3 days then 2x twice a day for 4 days, then a week off for that purpose. He takes with Hardys which has b12 in it, and has had b12 tests since and stayed at top of normal range.
Mio marito prende la metformina, 750 mg, da più di un anno, per il diabete. Non abbiamo notato effetti positivi sul Parkinson...
Another perk for Metformin is it lowers the covid flu chance. My sister is a nurse and gave me the information about it. She said they are banded from talking about it, but thinking back I've been healthier since I went on it.
Covid 19 is an illness caused by a coronavirus - not at all a flu - more similar to the common cold virus. Silly names usually come from silly people.
Metformin is thought to improve ICU survival for people WITH DIABETES suffering Covid 19.
I have not taken Metformin but my husband recently did and ended up in the ER with a severe reaction that included serious dehydration. Docs say his response was unusual...he felt ill at the starter dose of one pill a day for a week, then awful at two doses. After two subsequent days of misery, off to the ER we went. If you do this, listen to your body. He kept telling me that his doc said he "would adjust." What his doc did not say is that metormin has a "black box" warning from the FDA because it can cause lactic acidosis...too much lactic acid in your bloodstream...and that can be life threatening. Somehow it has become the role of pharmacists after the prescription is written, to warn us of downsides. ..if you don't specifically request counseling, you just get a piece of paper with tiny type that lists possible problems.
We are all some kind of chemical experiment...I am glad you are researching thoroughly first. We should be prepared for what may happen so when and how to respond if it does.
It’s well documented that insulin resistance makes PD worse which is why metformin can be beneficial for people with or at risk of PD. But, my question is, in the absence of insulin resistance, does metformin or berberine help someone with PD. I believe metformin does not but berberine does by means of increasing levodopa in the gut which enables increased dopamine in the brain. But if I am understanding correctly, this does nothing to promote dopaminergic neuron survival.
Despe in reply to
Found this, CC scienceofparkinsons.com/201...
in reply to Despe
Great read Thank you!
reading that was a roller coaster.
Berberine is a natural Dpp-4 Inhibitor. Which for me excited. I had hoped it is more than just an antioxidant. But then the last part about the studies in Korea; in some trials, despite being a DPP-4 inhibitor it contributes to mitochondrial dysfunction
The prescription version of DPP-4 inhibitors are interesting.
But that gets me to circle back to Exenatide and drugs with the same mechanism
in reply to Despe
Additionally and importantly, Sitagliptin which is Metformin is a DPP-4 inhibitor. This means is could potentially get similar results to Exenatide but by coming from a different biological approach.
This article is excellent!
Finally the level of info I was seeking.
So now what do I do?
Doctors appointment in a few hours. Do I ask her to proceed with the Exenatide like my neuro prescribed or do I go the DPP-4 inhibitor route and go with Metformin which was offered by a different doctor back in 2020.
Or do I sit on my increasingly twitchy hands and wait like most PWP?
Despe in reply to
CC,
Neither one is good for my husband at this moment, but I can't really tell anything for you. All I mentioned to his MDS is Ambroxol trials and Dr. was fine with that.
Found a frontiersin.org paper about metformin for PD in animal studies. “Metformin reduces the damaging effects of MPTP.”
WinnieThePoo in reply to
So does just about every substance known to man. If only we were mice and parkinson's was mptp induced damage, we'd all have been cured a hundred times. It's SOOO frustrating 😢
in reply to WinnieThePoo
So my decision to not return to the doctor who offered metformin was a good judgement call. At least Exenatide (and the others you mentioned being trialed) show some real evidence of helping.
If berberine is not absorbed then it is pointless.
My research resumes. Meeting with GP tomorrow. Maybe I should try and switch to the “French version” of Exenatide. Or maybe I should tell her I’m certain I have a pancreas in need of meds? My poor pancreas.
WinnieThePoo in reply to
CC. There is absolutely zero evidence that I am aware of that the other GLP-1 receptor agonists ARE better than exanatide. They might be. They are (were) in trials. If cost is not an issue, and you have a neuro prepared to closely supervise your use, and you understand it might all be a waste of time and not work, then stick with exanatide.
And take a look around you in here. This snowflake disease affects everyone differently. With the possible exception of B1, which maddeningly I cannot get to work for me, there are any number of proponents of usually multiple supplements and off-label alternative medicines regularly asking for help and advice with problems with their PD condition. And any number of people apparantly following a more conventional therapy not doing so. Like Jimcaster , my ambition is to wean myself off forums, and get back a life. It's not easy - we all want a cure and to be aware of good therapies.
in reply to WinnieThePoo
I did not say or even imply that the GLP-1 receptor agonists are better than Exenatide.
Since writing my comment that you were responding to I better understand metformin. It is a DP-44 inhibitor and does have neuro protection potential not related to insulin.
I have been on this forum for about 6 months. And I’m grateful for all that I am learning. Obviously there comes a point of diminishing returns.
As far as people “following a conventional therapy” not needing advice whereas those who are not as conventional needing advice; correlation does not always equal causation. The conventional are less likely to seek advice from strangers online.
I fully intend on going the conventional route and supplementing with additional knowledge and well, supplements.
WinnieThePoo in reply to
If you're sure. Remember association is not the same as causation
It ALLWAYS rains when the pavements are wet 😉
google.com/url?sa=t&source=...
in reply to WinnieThePoo
I’m off to put on 4 hats, Smarty Pants.Oh, but you don’t wear pant Pooh.
While many on this forum are determined to be right, I’m trying to catch up and be informed.
WinnieThePoo in reply to
It's a UK USA English confusion for me. I think when you say pants you mean trousers. When I say pants I think you mean shorts. Or is it briefs?Anyway, I would be cautious about starting a drug which might be associated with dementia and parkinson's
in reply to WinnieThePoo
My sarcasm was not appropriate. I was attempting to be funny in response to your witty quips which I can’t keep up with. I really just need to focus on PD info.
Thank you for providing me with so much pertinent information.
in reply to WinnieThePoo
Thank you for the metformin link. “Even after adjusting for multiple cofounders.”
Yipes.
I wondered why it’s not being pursued more since it’s a DPP-4 inhibitor and that explains why.
Berberine, also being a DPP-4 inhibitor, I wonder if it increases dementia risk?
Perhaps yes but less given that it just simply does less overall.
I have not seen anything stating Exenatide or the other drugs that operate in much the same way, causing dementia.
WinnieThePoo in reply to
Likewise I haven't seen anything associating exanatide or other glp1 receptor agonists with dementia. I have all my fingers and toes crossed hoping that in a couple of years they are shown to be safe and tolerable and effective, and are accordingly available and helping meMeantime I'll wait
kevowpd in reply to
I second WTP and add this:
You've recently commented that this search has caused anxiety and fatigue. I do not think it is worth it. Your good life years are now. There are no answers yet when it comes to a credible disease modifying treatment. If you can get an endocrinologist to greenlight (the reason I suggested that is that I doubt your PCP has much experience with administering Ex in a non-diabetic) your Ex use then have a go at that but even then, prepare for the benefits to be basically undetectable if it is truly disease modifying. Or maybe it has a symptomatic effect too, which you'll be able to observe. That would be good, obviously.
But taking a trip down every drug and supplement tunnel that someone here points you towards is not good for your mental health, and so far none of them have proven to be the answer, or they would be standard issue and we'd all be taking them. Just because someone on HU is incredibly enthusiastic about his or her protocol or conceptual framework does not mean that it is valid or the answer. Parkinsons is evidently incredibly complex in both ethology and pathogenesis, and it is unlikely that the answers will be simply taking x, y or z that you can buy at the vitamin shop or OTC meds.
You should also consider being medicated for PD, based on what you wrote about your hands not working sometimes and your anxiety.
Our time is limited. For those of us with PD, it's more limited. Use it wisely, is my suggestion. When there's a compelling answer, you'll hear about it whether you have spent the last 5 years relentlessly researching PD or spent the last 5 years running around the park with your kids.
in reply to kevowpd
“I might consider being medicated for PD”Well, I went to a neuro who refused to prescribe anything saying I don’t need it. So I went to a different neuro who prescribed Azilect and Exenatide and said I don’t need CL.
I believe you and others have been on here for years. I have been on here to learn for about 6 months. There is a steep learning curve. So saying “spent the last 5 years relentlessly researching PD” does not apply to me at all.
Yes the search for PD info causes anxiety and fatigue and it’s definitely not worth doing indefinitely. Just getting myself oriented to my new situation then intend on resuming life as normally as possible.
kevowpd in reply to
You had mentioned reassuring your father a decade ago that everything was going to be ok (and being sufficiently engaged with his treatment that you were asked to wait outside during neurologist appts) so I had assumed your familiarity with PD treatments conventional or otherwise extended back further than 6 months. Sorry.
In any event, I meant, when the next big development occurs, will you have been living your life, or will you have been obsessed with PD. The five years was to make a point about living your life. I didn't mean 260 weeks.
There are several things you can learn from those that have been doing it longer than you, and some of those lessons are more valuable than learning about yet another substance that has a tiny chance (or practically no chance) of being a DMT for PD, but I suppose everyone gets there at the pace they want to.
in reply to kevowpd
Kevowpd, you don’t want to help me. You take pleasure in telling me I’m wrong. Please, move on.
I’m seeking PD facts not a psych assessment from a stranger who has a history of being hostile to me.
kevowpd in reply to
Not being your yes-man or not providing you with praise at every turn is not "hostility", despite what some here of dubious repute may encourage you to believe.
I and others have been immensely patient with you and your extreme sensitivity. You've had run-ins with a number of people on this board that don't have appear to have reputations for starting conflict, yet you've somehow concluded that you have never been the problem.
If you don't want people to comment on your emotional state then perhaps don't bring it up.
in reply to kevowpd
Immensely patient? It’s not like communicating with me is a requirement. To the contrary. I’ve asked you repeatedly not to. I ask you to leave me alone in multiple occasions and you refuse.
The topic was metformin.
I sincerely wish you the best but I will never be responding to you again. I hope you can get the emotional support and help you need. Best wishes.
kevowpd in reply to
It's a public forum, one you enthusiastically occupy the space on. If you want to limit the participants in the discussion there is Facebook or the private message feature. I stand by my remarks and regard your 'best wishes' as insincere cynicism.
What is the benefit?
=================================
clinicaltrials.gov/ct2/show...
The bioavailability of berberine is extremely low. Only 0.5% of orally ingested berberine are absorbed in small intestine and about 0.36% can enter the systemic circulation. About 56% of ingested berberine was not absorbed and additional 43.5% is lost due to metabolism in small intestine.
Are you worrying about trying exantide? Is there a downside to trying it?
in reply to Astra7
I am worried about it. Very worried. Before trying it I want to make sure there is not a better and safer alternative I should be exploring.
It’s hard for me to differentiate between my anxiety due to PD and valid concerns.
Ive been taking it for Diabetes for over 20 years and last year got diagnosed with PD....interesting there is a study that Metformin depletes B1 .....so im supplementing with this 
JustJeff. Brilliant observation and thanks. I wish we could publicly shame these quacks who pass for doctors. I too was on Metformin for 15 years before diagnosis. I am a Parkinson's patient also with diabetes. That's the only link that has been almost proven.
I read up the same clinical research on the depletion of B12 (no, not B1), and a former nurse has written a book about how she has treated patients who came in with Parkinson's like symptoms and showed a B12 deficiency. So, I spent the better part of two years trying to convince my doctors that I didn't have Parkinson's and probably had Essential Tremors at best. I insisted on the B12 test which came back normal and cost me a fortune.
Cclemonade, I am truly getting worried about you. With two kids that depend on you, you can't be too careful. Please avoid quacks.
RKM
My husband takes it and tolerates it well for his type 2 diabetes. But he is a heart disease patient and his brain works well and thus is very disciplined about his meds. Discuss it with your GP. I am hearing this for the first time. I will take my own advice and discuss it with my diabetic nurse (if she will answer the bloody phone) Problem is today if your question is not Covid based then they want you to search for the answer yourself.
Here is something to discuss with your husbands doctor/cardiologist when you both get around to it:
ncbi.nlm.nih.gov/labs/pmc/a...
Art
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