Anyone care to interpret this article? - Restless Legs Syn...

Restless Legs Syndrome

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Anyone care to interpret this article?

40 Replies

researchgate.net/publicatio...

This is incredibly important for people taking either buprenorphine or methadone. It might mean all the difference in the world.

It sounds to me that if you're going to use buprenorphine it's best to do so three times a day (TTD). If you take it this way it will actually down-regulate the naughty D1 receptors (yay) as well as OF COURSE sadly down-regulate our precious D2 receptors, because doesn't everything down-regulate our D2s (food, sex, etc). If you "binge" buprenorphine, meaning once a day, it reverts to up-regulating the naughty d1 receptors as well as OF COURSE down-regulating the D2s.

Methadone on the other hand will down-regulate the D1s if binged (yay), but not if taken three times a day, in which case it will flip and up-regulate them (boo). Either way, the D2s take a hit once again.

This is unreal. How is this possible. Why should altering the timing change the pharmacology of a drug. Am I reading this wrong? I need a drink. Make it a double.

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40 Replies
Elffindoe profile image
Elffindoe

I did respond earlier, but had a technical hitch and my comments got lost.

I can't be bothered writing it all again.

The upshot is that there are too many differences between the situation in the study and the effects of methadone or buprenorphine on people with RLS to be able to reliably apply the results to RLS.

Notably, the mice didn't have RLS.

A better study might be to study the differential effects of buprenorphine patches to sublingual tablets in people with RLS.

in reply toElffindoe

Yeah, good luck with that RLS study idea. My money is on the mice.

Elffindoe profile image
Elffindoe in reply to

I don't have a gambling addiction.

in reply to

And once again, the allegedly safe, albeit addictive alternative, to the DAs, might just be DAs in disguise. There's a pattern appearing here. Don't you see it? As long as a drug simultaneously down-regulates the D1s (think Neupro, and now buprenorphine and methadone) it has a much better track record in terms of augmentation and withdrawal. So Lyrica and the like, if it truly is a D1 antagonist, is useless to us and possibly just as dangerous as prami in permanently altering our receptors. My Golden Globe winners are 1mg neupro patch, 5-10mg methadone just once a day, and some low dose of buprenorphine that can be taken 3x per day or a patch, if there is one. Some combination of these three with bi-annual switch-outs. That's my suggestion and I'm sticking to it.

in reply to

So this is what our members do, they print-out this material and only this material because doctors don't want to read a 100 articles. And when the doctors want to give them prami or oxy or Lyrica they tell the doctor "you're killing me." My D2s are puny and my D1s are bullies and you want to give me substances that are just gonna make them more so??? I need this, this and this in this dose, etc. Hopefully the doctor will oblige. If not then tell the good doctor, or hospital, "I'm not leaving, call the police." My brother in law did that at a Walgreens when they refused his Covid shot based on a technicality. He spoke to the supervisor, then the supervisor's supervisor and eventually the regional manager. He got his shot and they didn't call the police. We're talking about people's lives here and health and happiness and probably that of their families. No more screwing around. We know what works and with the least amount of harm to our precious receptors. I'm not seeing any cases of new-onset RLS after withdrawing from buprenorphine or methadone. And believe me I've looked. Doesn't mean it doesn't exist, maybe I'm just not seeing it, but I am finding post-Lyrica RLS and post-Oxy RLS all over the internet. So just saying..

Butterflysun1 profile image
Butterflysun1 in reply to

Could you point me to info about post lyrica RLS on the Internet apart from on our site. I have a strong suspicion mine became permanently worse after taking it though I have seen nothing to corroborate this.We are learning all the time about D1 and D2 effects etc. It seems it will all eventually add to our understanding & hopefully safe treatment with any

luck plus the Adenosine & other stories now emerging.

Thank you for your interesting posts

LanaCSR profile image
LanaCSR in reply toButterflysun1

What is adenosine and does it help RLS?

Butterflysun1 profile image
Butterflysun1 in reply toLanaCSR

I’m not good at summarising all the info. I just hang onto in my head what might be promising. I have found Elfindoh & Lotte have been good in the past at explaining some of the science

LanaCSR profile image
LanaCSR in reply to

Just putting in my 2 cents' worth. I am prescribed buprenorphine sublingual 3 times a day with good results, and I've noticed if I miss a dose, my RLS gets bad. 🙁

Spurdog1 profile image
Spurdog1

Curious "why Lone Pine"? Is it what i'm thinking?

in reply toSpurdog1

It's a place near the Sierra Nevada mountain range and as close to heaven as I will ever get :)

goosiegander profile image
goosiegander in reply to

Lovely! I always visit the Lone Cypress on 17 mile Drive.

in reply togoosiegander

Say hello for me, one day I will get there. We tend to stay more north west in California.

goosiegander profile image
goosiegander in reply to

I will say "hello" from you next time I am there, with any luck in May 2022. I used to live in SFO and we have a home there that is rented out permanently. I usually get over 3 times a year, pre-pandemic but have not been since December 2019. I stay with my best friend in SFO and we usually escape down to Carmel for a long weekend, we love it there. I much prefer Northern Cal to Southern, just my preference, although I did enjoy a trip to San Diego about 20 years ago, nice city.

Jackie x

Spurdog1 profile image
Spurdog1

completely different, thanks for the reply though. Would take a while walking up there...LOL

bookish profile image
bookish in reply toSpurdog1

Maybe like me, you are thinking Malcolm Saville. Grew up with the Lone Pine Club and I loved it in Shropshire, the first time I walked the Long Mynd and Stiperstones years after seeing those places in my head.

Spurdog1 profile image
Spurdog1 in reply tobookish

Absolutely, and I must see (bucket list) the Long Mynd and The devils Chair. Oh and a trip to Rye. I absolutely loved those books, rather than Amazon.

bookish profile image
bookish in reply toSpurdog1

I would love to go to Rye......So many fabulous books, (and I have to confess here to making my 'living' selling second hand books having had to leave previous job due to health) - I have a house full and they give me endless joy. Currently on Rosemary Sutcliff and Susan Cooper but still re-read my Noel Streatfeild's, inherited from Mum. Happy reading x

Spurdog1 profile image
Spurdog1 in reply tobookish

Wonderful paradise, I'd love to own one bookshop. I confess to buying some oldies, including an old Lone Pine...nothing special (like first day cover, signed). Often would like to go back to my youthful books. How about John Creasey, Berkeley Gray, and Percy F Westerman, Biggles. Now you've blown it. Would love to collect afew specials...

bookish profile image
bookish in reply toSpurdog1

Sadly no bookshop, not any longer, but plenty of book fairs around the country. Many of my own are much-loved and well-read, not pristine firsts (I try to sell those, if I can get them!). Just addicted to books, like most dealers I know. Not many buy Westerman now, but I have sold a few, and have just got a big collection of Biggles, so trying to resist reading the lot. 'Children's' books have much to offer us adults, even if we didn't know and love them as children. Perfect escapism too, in need.

Spurdog1 profile image
Spurdog1 in reply tobookish

Is there some place where book fairs are registered, EG a website, like this....pbfa.org/fairs (though this one looks expensive)

bookish profile image
bookish in reply toSpurdog1

Sadly no longer an overall website. The PBFA (Provincial Booksellers Fairs Organisation) is quite varied and although some books are highly priced (and stunningly beautiful/exceptionally rare) there will also be many lower priced and reading copies at the fairs. It is the biggest fair-holding organisation, a co-operative of dealers, so you have a wide range of businesses, large and small, carrying stock at a wide range of prices. Lots of small fairs up and down the country as well as the September York fair which is the biggest in Europe. People have to be trading for a while before applying and being approved (hopefully) as members so you also have some comeback if a dealer misdescribes something or there is a problem. There is also the ABA if your tendency is to the Antiquarian, although they run less fairs. aba.org.uk/news/firsts-onli.... (Both are holding online virtual fairs due to Covid, as many events have had to be cancelled, but the items on the websites are a bit more likely to be higher priced highlight items - not all though, if you dig around you will see a mix). There are independent fairs too, but not as many as there once were. If you search for your local area you may find some, or PM me and I'll try to steer you in the right direction. We are lucky in our area to have an active circuit of small events but it is rare. Many dealers use Ebay, Amazon, ABE, Biblio etc or their own websites, or all of the above!

goosiegander profile image
goosiegander in reply tobookish

I picked a lovely old book at the tip, along with a few other old books in a bin bag. The people running the recycling centre thought I was mad looking at old books but said help yourself. So I did and I found a very old copy, 1st or 2nd of Wuthering heights! Also a 1st edition of an old Gilbert & Sullivan Merry Widow. There was also a lot of Sci-Fi, which my husband really enjoys.

Spurdog1 profile image
Spurdog1 in reply tobookish

Have you any hardbacks that you sell, please DM privately.

goosiegander profile image
goosiegander in reply toSpurdog1

They are all worth a visit, Ross-on-Wye is great for dusty old bookshops as well, I can spend hours!

Spurdog1 profile image
Spurdog1 in reply togoosiegander

Good grief, they're all coming out the woodwork (Meant nicely), you forgot Hay on Wye Goosiegander. I have never met anyone that liked the Lone Pine series, and more on here...LOL don't rush

goosiegander profile image
goosiegander in reply toSpurdog1

LOL😀 I did forget Hay!

Spurdog1 profile image
Spurdog1 in reply togoosiegander

Can i have a link to promote Ross's book fair? Give it a plug

goosiegander profile image
goosiegander in reply toSpurdog1

Sorry Spurdog, I don't have a link. I live in Hampshire but like to travel to different "bookish" little towns to while away the hours. Jackie 🙂

bookish profile image
bookish in reply togoosiegander

Well I might be able to help there - Lyndhurst on Saturday! No idea how big, I've never been to the fair, but it has been going for ages thiswaybooks.com/events-fai..., so if you are feeling deprived.......

goosiegander profile image
goosiegander in reply tobookish

Oh Yayy!! I will pop down to Lyndhurst, early because of the rotten queues just getting into the place! Thanks very much for that heads up, a nice day out, I was wondering about going out for a drive this weekend and Saturday is perfect as we will be in Ropley on Sunday doing a home repair, yawn....

bookish profile image
bookish in reply togoosiegander

Happy hunting!

goosiegander profile image
goosiegander in reply tobookish

Thank you 🙂

bookish profile image
bookish in reply togoosiegander

Fair is 10-4 and looks good, wish I could be there! Years since I was in Lyndhurst....

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goosiegander profile image
goosiegander in reply tobookish

where are you based?

bookish profile image
bookish in reply togoosiegander

Lancashire for the last 25 years x

goosiegander profile image
goosiegander in reply tobookish

I like it up there, very much. My husband is from the other side of the hills, a place called Rastrick and we regulalrly go up to see his Mum x

Spurdog1 profile image
Spurdog1

For the benefit of all....en.wikipedia.org/wiki/Lone_...

in reply toSpurdog1

Can never have enough Lone Pine(s)

Spurdog1 profile image
Spurdog1 in reply to

Needles(s) to say...LOL

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