Buprenorphine Effectiveness for Severe Restless Legs Syndrome and Dopaminergic Augmentation

[ChickenTwisty]

I don't think this has been posted before, but here is some data from SLEEP 2023 supporting what those on Buprenorphine have been saying about it's effectiviness. This is a summary of data collected on 54 patients showing a marked improvement in RLS severity at 12 months on Buprenorphine (Summarised at two sources).

Berkowski J, Wang L, Mehra R. Longitudinal assessment of buprenorphine effectiveness for severe restless legs syndrome and dopaminergic augmentation. Abstract presented at: SLEEP 2023; June 3-7, 2023; Indianapolis, IN. Abstract 0699.

neurologyadvisor.com/report...

my.clevelandclinic.org/depa.....

[Joolsg]

I have posted it quite a few times to help people get it prescribed. Dr Andy Berkowski did the study.

[ChickenTwisty in reply to Joolsg]

Sorry, I did a lot of searches on various terms from the article before I posted and couldn't find a link to this data.

[ChickenTwisty in reply to ChickenTwisty]

But now I have found it posted by Shumbah ... didn't mean to post the same thing twice healthunlocked.com/rlsuk/po...

[Joolsg in reply to ChickenTwisty]

The more it's posted, the better. Sadly, I haven't been successful in getting a gold standard trial of Buprenorphine for RLS carried out in the UK. King's College & Aneurin Bevan turned down a trial. Only Bart's, London said they could help, but only at stage 3

I am still waiting to hear from Leeds General Hospital & I'll also be asking Dr Steven Bell, who did the recent RLS gene study, if he can help.

Dr Berkowski's trial is 'anecdotal' because it wasn't double blind, placebo etc.

We really need a larger, fully gold standard trial.

[RLSLearner in reply to Joolsg]

Joolsg,

I dont think a study would need to be placebo controlled. More of a 'non-inferior' study to show that Bup was as good as, or "non-inferior', to a standard therapy. Often these studies show the new treatment is non-inferior by having more benefit, fewer side effects etc.

[Joolsg in reply to RLSLearner]

You're correct and in fact it would be cruel!They would hopefully do trials comparing patch to pills or methadone v Buprenorphine.

[pythons in reply to Joolsg]

I see a lot of people splitting the buprenorphine tablets but I thought you weren't supposed to split them. I've been prescribed 200mg tablets but would like to start at a very low dose to see how I am with them.

[Joolsg in reply to pythons]

My pills have a score mark for cutting.I've cut every brand possible for the last 3 years.

[pythons in reply to Joolsg]

Thanks for your reply. Mine don't have the score marks and it does say on the leaflet not to split so I'm a bit concerned about doing it.

[Joolsg in reply to pythons]

The only Buprenorphine pills that cannot be cut are subutex or similar brands containing naloxone as well as Buprenorphine.In the UK, the Accord, Sandoz, Prefib brands can all be cut.

[pythons in reply to Joolsg]

Thank you so much. Mine are Sandoz and no mention of naloxone so hopefully will be fine then. Thanks for your help--it's much appreciated.

[Joolsg in reply to pythons]

My pharmacist has even pointed out to me that Sandoz brand is easier to cut, as they have score marks on the pills.It's best to start as low as possible. We all respond differently to Buprenorphine.

I know someone who only needs 0.2mg, I need 0.4mg and others need higher amounts- 1 or 2mg.