PEA?

[SusyTe]

Has anyone heard of something called PEA (see link below)? A lady in a PMR group I am in on FB is talking about it and saying she is going to try it.

accurateclinic.com/accurate...

[powerwalk]

I have heard of it alright. I didn't try it as I thought it would be just something else that didn't work! I have fibro as well as pmr and have spent a fortune over the years looking for something that actually works. Interested also to hear if anyone else has used it or knows anything about it.

[Hidden]

I think it has come up a couple of times but no one reported any rests which usually means nothing positive arose. 🌻

healthunlocked.com/pmrgcauk...

[SusyTe in reply to Hidden]

Thank you for replying, and apologies - I should have searched for it on here before asking. X

[Hidden in reply to SusyTe]

That's fine. I was surprised to find it so easily. There may be someone lurking with more info.

[SusyTe in reply to Hidden]

Thank you. I am on my ‘phone and didn’t see the search box on here. 🙄 x

[Hidden in reply to SusyTe]

It is hard. To search just pmr gca you have to have a message open. It could be worth searching on the whole HU site as well.

[SheffieldJane in reply to SusyTe]

As most of us have Pred head repeat away, we won’t notice. 🙂

[PMRpro Ambassador]

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

As far as I can see from the citations in various papers about it it is predominantly expected to benefit neuropathic pain - so more likely to reduce a need for amitryptiline or gabapentin. However - possibly worth a try - providing it isn't too expensive! I can't find out how it is made/derived.

[SusyTe in reply to PMRpro]

Thank you - much appreciated.

[Danda99]

I (wasted) spent quite a bit of time researching PEA. Firstly, there are two supplements with the same acronym PEA. One, Phenethylamine, is quite readily available and is recommended as a mood enhancer and for weight loss; the other being Palmitoylethanolamide the one being promoted for pain. It is derived from a fatty acid, sourced from egg yolks, and most research seems to be in Australia. It must be taken twice a day for at least 3 weeks. It is expensive. I bought a sample sachet out of interest but there is too little of it to do a meaningful trial. Reviews from users were mixed and were not specific about the type of pain they were addressing. You can get lozenges containing PEA from iherb.com which claim to help with mild/moderate pain. I concluded it is not something to get excited about at this stage.

[SusyTe in reply to Danda99]

Thank you so much!

[PMRpro Ambassador in reply to Danda99]

Thank you! One article I found said you might need as much as 2 months to notice any difference - and the scientific stuff reported several cases with no positive result. I don;t mind things being not effective in a study where I didn't pay - but I don;t like putting money for nothing into people's pockets ...

[Galloping]

I also read about PEA on a FB forum of PMR sufferers. Several people raved about how good it is at helping with the pain, especially when tapering, referring to it as a steroid sparer.

Many of them, especially in Australia got it made up for them by a compound chemist but I had no success finding one of those in the uk.

I wanted to give it a try so eventually ordered some from Amazon at around £20.

The tablets are large chewable ones which I take when I remember!

That may be the reason why I haven't noticed any benefit as you are supposed to take it twice a day.

Anyway, at that price I won't be bothering again, though having paid out I should at least give them a proper trial.

[Linny3]

Thank you . I looked it up and it looks interesting. Found a lot of info about it so I think I am going to give it a try. I especially like the idea of a cream to rub into the painful areas.

The capsules have sorbitol in them so anyone who can't use sorbitol may not be able to use this product orally.

[LIVEORDIEHEREIAM]

Wikipedia article mentions some promising studies but I agree with most replies here--wait and see. I have TMJ which was addressed one of those studies that says it worked better than ibuprophen that I can't use. I am keeping watch on PEA.

[SusyTe]

Thank you all for your responses and information - much appreciated.

[IslandRN]

I am on the same facebook page and personally I take issue with many of the posts as lots of misinformation and questionable advice offered in addition to those that claim "miracle cures"! Concur with comments specific to PEA as the clinical studies done thus far show some improvement with a few patients suffering from spinal injury/neuropathy however not with PMR type pain-of course you may get a person claiming it works for them and maybe it did but who knows if it's PEA since everyone posting about it has already been on prednisone for a good bit of time so maybe a coincidence since again no clinical study to date finds it to be a viable treatment for PMR. Furthermore, the incessant bashing of prednisone gets old as more often than not the side effects are not nearly as bad as many in the FB page make it out to be.I am an RN and this is the place to get the best advice and information with managing PMR!

[SusyTe in reply to IslandRN]

Thank you for your reply - much appreciated.

I am not sure it is the same FB group we are in - there are several PMR ones - as the one I am in doesn’t give misinformation or talk about miracle cures. My group chats about day to day life, exchanges jokes, photos of pets etc and is generally lighthearted. We try to cheer each other up. And always suggest consulting a doctor or rheumatologist for medical advice. I was in a couple of other PMR groups on FB but left them for exactly the reasons you mention. 😊