Any new research on RLS or its treatm... - Restless Legs Syn...

Restless Legs Syndrome

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Any new research on RLS or its treatments in 2025?

MrCrow profile image
15 Replies

I like to keep up to date information about RLS and was wondering of others have found any pertinent new research directions for RLS in the coming year/s.

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MrCrow profile image
MrCrow
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15 Replies
SueJohnson profile image
SueJohnson

Join Restless Legs Syndrome Foundation for $40 - rls.org They sponsor research and list it in their monthly magazine.

Joolsg profile image
Joolsg

Nothing new in the last 6 months.I post about anything new that appears in my searches.

I was hoping that Dr Stefan Clements research on ecopipam and DAs would progress. But that all went very quiet. I suspect they are doing trials over at least 2 or 3 years to avoid the catastrophic decision that happened when DAs were licensed after a 12 week trial. And a few years later they realised how dangerous those drugs were.

Shumbah is trying parasite therapy- that's a possibility.

I did research faecal transplants around 5 years ago but that has potential serious side effects.

Sibo treatment/vagus nerve stimulation have all been talked about.

The gene study done by Cambridge University (Dr Steven Bell) identified the genes responsible for RLS and there was a talk about repurposing drugs based on genes.

Of course absolutely nothing further has happened. No drugs have been repurposed and we can't even access the opioids that have been proven to help.

But.... a new year brings new hope.

MrCrow profile image
MrCrow in reply toJoolsg

About Ecopipam, while it seems useful for those who've already augmented on DAs, for others it seems like pouring water and gasoline on fire at the same time. Afaik it blocks the excitatory D1 Dopamine receptors but DAs in addition to upregulating D1 receptors, also down regulate D2 and D3 receptors. It just sounds like messing around with the dopaminergic system is a ad idea when it come to RLS especially for new patients.

Feel free to correct me though.

Joolsg profile image
Joolsg in reply toMrCrow

I agree. I don't see how it can work. Unless Dr Clements has done something strange with ecopipam.

EndlessRLS99 profile image
EndlessRLS99 in reply toJoolsg

Maybe docs will be less reluctant to Rx THIS opioid?

prnewswire.com/news-release...

MrCrow profile image
MrCrow in reply toEndlessRLS99

Interesting! The mode of delivery makes it less likely to abuse?

Joolsg profile image
Joolsg in reply toEndlessRLS99

Interesting find. Oxycodone/Oxycontin for RLS is licensed here in UK for RLS.It didn't work for me - but it does seem to help many.

RiceyRiceRice profile image
RiceyRiceRice

I would also add that Suvorexant helps with RLS. Here too, similar to gabapentinoids, patients with dopaminergic pre-treatment achieve significantly worse results.

Suvorexant is not approved in Europe. However, daridorexant, which belongs to the same group of drugs, is.

In a German RLS group, there are some who report positive results.

I just hope that nobody will be treated with DA's anymore.

My neurologist said that RLS is generally easy to treat.

However, once augmentation has occurred, it can be almost impossible or very difficult.

MrCrow profile image
MrCrow

Yea I saw that paper by Garcia about Suvorexant. Looks like another weapon in the arsenal. Might be perfect for me since I suffer from sleep maintenance insomnia (independent of RLS).

Bantamdyno profile image
Bantamdyno

Doesn't appear to be any research into pain points (trigger points) but there's no need you can find them yourself and get on top of rls problem🤔

MrCrow profile image
MrCrow in reply toBantamdyno

Only 1 i have found is lack of sleep and stress. Another one is screen time. Trying to fix both. But am worried that this is a progressive disorder and worsens with age.

Bantamdyno profile image
Bantamdyno

No these are points on the muscle.

jitters62 profile image
jitters62

Dr Walters at Vanderbilt is researching the possibility that RLS is an autoimmune disorder.

give.vanderbilthealth.org/c...

MrCrow profile image
MrCrow in reply tojitters62

Very interesting. Thanks for the lead.

Bantamdyno profile image
Bantamdyno in reply toMrCrow

Yes it most probably is, but we have the same internals as a caveman and what did he eat,🤔 I found going on the Haye diet made a large difference,(google Haye diet)😅

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