I've been looking at this lately and I'm wondering if some of you already know about it and/or are using it? I've never seen it in anybody's stack.
“Addition of um-PEA to PD patients receiving levadopa therapy elicited a significant and progressive reduction in the total MDS-UPDRS score (parts I, II, III and IV). For each item, the mean score difference between baseline and end of um-PEA treatment showed a significant reduction in most non-motor and motor symptoms. The number of patients with symptoms at basal was reduced after one year of um-PEA treatment,” they reported, concluding that “um-PEA may be an efficacious adjuvant therapy for PD.”
Very grateful that you have alerted us to this promising therapy. Considering that there were no reported side-effects, according to the Parkinson's News Today article, this substance bears closer examination, at the very least. The next thing that springs to mind is: "How easy is this to obtain?". I am struggling through a very difficult "off" phase as I write this reply but I hope to return with further comments later on. Thanks again for bringing this to our attention.
Seems to be available in the UK (Normast 600mg x60 for £45 GBP) via Amazon.. Looks potentially promising but as MBA says, it would be interesting to hear from people who have tried it.
Hi, I tried 600mg x2 per day but it (I assume) was giving me brain fog and insomnia after a week.. Going to give it another go soon @600mgx1 to start... Will keep this thread posted 🙂
First time I have heard of this but it sounds promising and has apparently been researched since the 1950's, check out youtu.be/RoRjnBsWHfo for more info as well.
I’ve been taking it for around 3/4 months. 1200 mg a day. (Suggested dose 900mg). It is helping me a lot with turning over in bed at night and reducing morning stiffness, but I’m not sure there are any other improvements really.
I was waiting to see how good it was before reporting in. It costs $75 (Aus) for 50 days supply.
My sister works at a pain clinic and says it is the latest thing they are giving to people with chronic pain who can’t be helped with anything else.
In the end I didn’t think it was really working and it was quite pricey. Interestingly just yesterday I read something that said Parkinson’s brains have about half the regular amount of PEA around their brain. I did wonder then how it would get to the right spot.
I now take Celebrex anti inflammatory every night and I can turn in bed pretty well.
Some years ago (and I think still) they used it in the Netherlands. Mostly for all kind of neuropathic pain. It is PEA, not um-PEA. I don't know if that is a further development.
Now I discovered that I bought some packages and then "stored" it and led it alone....
I will give it another try (Package of 30 capsules PEAPURE400mg).....
Here's the website (in Dutch) , close to the bottom on the left there some englisch information : "English Articles"
In addition to pointing out the stuff from China might be impure, the article also makes the point that if it is not ultra micronized or micronized, it is a "cheap rip-off." I'm wondering if this is the same situation as with lipophilic (liposomal) and non-lipophilic compounds, i.e., size (of the molecules) matters -- one works, the other, not so much because the stuff on Amazon is not micronized?
Bulk supplements is by far the cheapest at $0.14 a gram or about $0.11 or $0.12 per dose and it has the best reviews. I( add the 5 star and 4 stars together for everything I shop at Amazon.) I'm surprised however to see that most brands have mediocre reviews. Now, if we can find out where bulk supplements is sourced, that might be the best choice.
PEA from Bulk Supplements is sourced in China, but is tested by a 3rd party lab in the US. The problem with Bulk Supplements is that all the customer reviews say it's the worst tasting stuff they've ever had and that they can't mix it with anything to make it palatable and is so bad that some of them even throw it away. The others by and fill empty capsules, which I'm not inclined to do.
Looks interesting Marc. I read your links in reverse order, and was disappointed there was no blinding in a 12 month study of a fairly small group. This article (based on meta analysis of studies for pain relief) cautions that there are inadequate studies to confirm safety in long term administration, and has a footnote that a double blind trial (after publication) had no better than placebo results
Your middle article, whilst positive, and providing a potential mechanism for effect, was about mice, and it has become abundantly evident to me in my brief association with PD that PWP are not mice.
I shall certainly keep a knot tied in my hanky about this one. There just seems to be so much happening in PD it gets harder to sort the wheat from the chaff.
That might be because they only studied it in advanced stages. If something works well in advanced stages, it is of course possible, but I don't understand how it could not work at all in early stages.
Agreed and I am not advocating for the stuff because I just stumbled across it, but you could say the same thing about most of what I take.
Since there is no profit in studying naturally occurring or endogenous substances, we rarely have the luxury of long-term, competent RCTs in humans, so while I would not take something just because it worked in mice, I would not decline to take something because there is only mouse data.
We’re stuck making our decision based on the probability of the underlying science, risk, costs, and accessibility and what information is out there is pretty positive.
Yup. I get the point about not wanting to miss something which might help. I wouldn't want to imply opposition to its use. I also recognise that one pill won't solve PD and a combination of therapies are likely to be best
It's just a bit like the advertising conundrum. We know 95% of advertising is wasted money - if only we knew which bit was the 95% we could slash the advertising budget.
There are so many possibilities even for one aspect like neuroprotection due to combating inflamation. In the space of 4 posts were this PEA and hydrogen enriched water. Once a neuron has been saved, it can't be extra saved.
Vigorous exercise and Exanatide both have about the same results for slowing UPDRS scores. In combination would they reverse it? Or are they alternative, rather than complementary ways to achieve the same result.
I have a pot of CBD oil capsules and a pot of 100mg B1 tablets sitting on the shelf, while I resist taking them to give me a chance to see what, if anything, is happening with BIIB054 (and the CBD oils would need some negotiating with the trial team if I wanted them)
And the problem is always the placebo effect. Many of these alternatives seem to have keen advocates on first use, which don't extend to long term results.
Most of the trials listed in this report did show success. That double blind that showed no effect was for spinal cord injury. I think all that says is PEA does not work for spinal cord injury pain.
Glad u found that PEA was mentioned 3 years ago on this forum
As you say, risk is an important decision making factor. With supplementation, the overwhelming view is that it might work but can do no harm. That is not always the case. There are people on this forum that spend a small fortune on supplements based on little evidence or on the placebo effect. That, of course, is their decision and I would never take it from them. They are at least buying hope.
So true. I'm 1 of those people who spends $$ on supplements. At this point in my life (after I've covered necessities) the choice is between having extra spending money or 'it MAY help my health,' I'm going with may. I figure the extra money is of no value if I don't have the health to enjoy it.
Plus, I have no illusions that some of what I take has little or no value, but I don't mind paying for hope -- because without hope, what's left?
I've tried a PEA supplement, Mirica, for chronic pain; it isn't micronized and includes luteolin. From what I gather it takes time to be effective for pain. I was impatient and gave up and went for CBD oil instead. CBD oil is a bit pricey, but so is Mirica. Perhaps I should have stayed the course.
{I don't have PD; I don't know what's wrong with me - could be MSA or pure autonomic failure or possibly ME/CFS. I am interested in supplements and therapies for nervous system disorders.}
since mid-August, 2018 at my neurologist’s recommendation. $56.01 includes s/h 120 count. My neurologist asked me to take that specific brand. She has me taking many supplements so I can’t speak to what it does for me exactly. I am doing better than last summer on every level so I just go with it.
I think so, too! I think the world of her, but she said her peers don’t have the same opinion. I happily pay out of pocket for her advice, but I likely wouldn’t for her peers...just sayin...
I take 2 capsules a day which is 700 mg total. I have to take it with borage oil and quercetin. I don’t know why...blind faith with a large dose of hope thrown in...
I never heard of borage oil but when I looked it up it’s an anti inflammatory. Sounds like you have a great doctor who thinks outside the box! Do you feel a difference since you started PEA?
As I mentioned before, I take numerous supplements on faith. I started them all at the same time so I can’t say what improvement I have gotten from one specific supplement. What I can say is that I feel lots better than when I was diagnosed a year ago! I was given no encouragement for improvement then, but... I DO feel better and I am by far more functional than I was. I pray that continues and I am thankful for every functional day.
justhavefun2, I've decided to try PEA and trying to figure out which brand buy. I read the link you provided and it doesn't say anything about being ultra micronized or micronized. Do you know if it makes a difference? Apparently,you're happy with Vitalitus.
I’m not sure...you may want to reach out to Vitalitus and ask them? I haven’t tried any other brand so I have nothing to compare it to. Have you looked at their website? Seems like a quality product to me...
Yes, I read their website and feel it's good. I will contact them, but I don't think their stuff is um-PEA. Apparently, there is a significant difference in particle size, but it's not clear to me yet if that makes a difference.
Huh...please let me know what you find out? Isn’t marketing something that isn’t what they claim illegal? I am so thankful for you and others on this site that use their time to research things. I am still working and barely have time for anything but self-care these days. So, a very sincere thank you!!
justhavefun2, I'll call Vitalitus tomorrow. You seem to feel it is beneficial to you, but you can't say for sure because you're taking other stuff so maybe naïve PEA does offer some benefit to some people. I will report back what they say.
I'd like Glen to try it too but I'm about to go away for a week and will look into which brand more thoroughly when I'm back. So I'd be very interested to know which product you choose Marc.
I think that is the right place to buy it. I don't know if you have seen this link I posted elsewhere, but, apparently, there is quite a difference in particle size. I can't find any PEA that is ultra micronized, though. I don't know how much of a difference that might make.
If the stuff was free, I'd take it. But at $35 for 60, 350 mg tabs, taking 2 or 3 a day for a year ($500) is more than I care to spend on something that's of no value. The trials are of ultra micronized PEA.
You're very fortunate to have a neurologist that pays attention to non-pharmaceutical therapies. It's rare. That a neurologist recommended it adds weight to the positive reports. I've read all the links posted on this thread, plus some, and cannot find a reason not to try it. Here goes.
When I was looking for someone like her, I was blessed to find help on this forum who told me to search for an integrative medical neurologist. If you aren’t local to Seattle, hopefully, you can find someone close to you.
Thank you! I have an appointment (for my husband) with Dr. Laurie Mischley in April. I understand she is a nutritionist specializing in PD, but it's not nutrition we are interested in, we have nutrition under control. We are mostly interested and looking for professional guidance in vitamins, supplements, and Mucuna Pruriens. Don't know how she feels about regular meds.
Ohhhh....she sounds like a great choice, too! Please let me know how his appointment goes? I won’t be switching, but good to gather information! Best wishes for a fantastic appointment!!
I've been playing telephone tag with the people at Vitalitus for 4 days, but finally had a long chat with them this morning and it's good news. They were very helpful, informative, and happy to talk. Answered all my questions.
Their product is micronized, but not ultra micronized. 99% of their product is smaller than 10 µm and half of it is smaller than 5 µm. I asked why they don't advertise that on the website and he explained they thought it would be confusing (to who?) which I found confusing, but that's what he said.
He went on to explain how the product is made, tested, and what's in it and why it's well absorbed, which I won't regurgitate here because it's long and on their website.
He also said it may take 2 or 3 weeks to show an effect in some people, so do not expect immediate results.
You had the information I was looking for on pea, did you ever find a resource for the ultra micronized? Think vitalitus might make a special batch, how's the progress? I ordered the lotion from them, I will give an update when it comes. just started comfortmax, slept so good last night for the first night high hopes! Anyone use any stacks with pea?
Did you get any result with your 2 bottles? I'm asking not just for me but for my mother (83) who has had awful post shingles nerve pain since Easter 2017 and it really gets her down. She also bought 2 bottles, but I'm wondering how long she should stick it out - I said 6 weeks, and if no result we'll investigate other pain relief - she's prepared to invest in 3 months worth - what was your experience? She's taking 400mg 3x per day.
I don't know if the PEA does anything for me because I take so much other stuff. There isn't any one thing I take that I can point to a benefit from because of this.
I sometimes think our expectation of supplements and nutrition is too high because we are used to observable and immediate results from pharmaceuticals. I think supplements and nutrition produces much more gradual and subtle changes.
That leaves me taking stuff based exclusively on my guess that the mechanism of action, along with whatever data might exist, make sense. I sometimes factor in the anecdotal feedback.
I've gone back and reread much of the stuff about it and I'm going to keep taking it.
When cost is a consideration, we have to arrange our supplements in priority order based on which ones have the most compelling rationale.
A fuller explanation of why I do not ever expect to see any benefit from any supplement is; what is going on with Parkinson’s is far more dramatic and complex than what could be addressed with any one supplement.
I don’t think of Parkinson’s as one thing, but instead as multi-factorial. The Dr. Dale Bredesen/Dr. Laurie Mischley school of thought. That is, our roof is leaking, but from 15 different holes, some of which are pretty large, and all of which have to be patched.
Parkinson’s causes other illnesses, sleep disturbance, nutritional deficiencies, hormonal, enzyme, and micro-biome imbalances, and if left unresolved, as these conditions accumulate and worsen, they trigger a cascade of other conditions and illnesses.
Some of our symptoms may be caused by 1 of these conditions, but many of them probably result from several of these conditions coming together. In other words, what is causing of vitamin D and vitamin B-12 deficiency might be unrelated to what’s causing intestinal permeability and sleep disturbance and it’s just unrealistic to expect anyone supplement to correct or mitigate several deficiencies. Rarely can pharmaceuticals address such a wide disparity of conditions.
Add to that improvements in deficiencies and illnesses that come from nutritional changes happen fairly slowly compared to pharmaceuticals.
Just for anyone is interested I found this collection of articles on PEA (scroll down). I was looking into it for my mother who has chronic pain from a shingles bout 2 years ago. Not sure about whether it's um-PEA or not. I've started taking it too (for Parkinson's and a neuroma on my foot) so can update with any developments.
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