link.springer.com/article/1...
Another trial result. Dr Diego Garcia Borreguerro has shown that Suvorexant significantly improved RLS in 40 trial participants.
Results were better in patients who had not previously been treatedwith Dopamine agonists.
Suvorexant is a sleeping pill used for insomnia and is currently being looked at to help Alzheimers.
This looks interesting, thanks Jools. I wonder if it is prescribed much in the UK.
Anyone out there experienced this drug?
Suvorexant (Belsomra) isn't currently licensed here: I've only found it approved in the US, Canada, Australia and Japan so far (although The Standard article about Alzheimer's treatment last year said 'common in other countries'):
standard.co.uk/news/health/...
Thanks for the info Chris 
Checked your bio. You seem to have tried just about everything.Do you mind sharing what if anything is helping you now?
Hi Jane: is this addressed to Joolsg or to me?
Oops appologies, yes you Chris
It took me a long long time to work out what was triggering my RLS and how to stop it: it drove me crazy at times for decades but I've only had very rare symptoms for the last year or so.
Fortunately, I think now, I never took any meds for RLS - and took very few meds generally until I had a mini-stroke and prostate cancer in 2021. Less fortunately, in terms of a comparatively easy potential solution, I also never had low iron levels.
My first discovery, quite a few years ago now, was magnesium citrate - which gave me a lot of relief, but I still had quite a lot of breakthrough RLS nights.
Trial and error then led me to making various other changes as listed in my profile which has left me largely RLS free:
Avoiding statins
Cutting out diet drinks and foods - artificial sweeteners particularly aspartame were triggers
Reducing sugary foods and drinks
Reducing caffeine
Trying to take regular moderate exercise
Staying cool in bed (temperature wise!)
Sleeping as much as possible on my side or front rather than on my back
My suspicion is that the above worked because I never took anti depressants (which were offered 30+ years ago for RLS) or dopamine agonists for RLS: I suspect it's a lot more difficult to reach a drug free RLS free state if one's been on DAs.
Thank you for explaining your situation. I'm very sorry to hear about your mini-stroke and Prostate cancer.
It's quite amazing you have found your solution to your restless legs. You have researched extensively.
The sleeping position is interesting. Unfortunately I can only sleep on my back due to arm pain otherwise.
Frozen shoulder accounts for one side but the other arm has hurt when lying down since my Thyroid disease was dgnsd 33 years ago.
The thing I need to concentrate on now is illiminating sugar and practicing an anti-inflaminatory diet.
I am lucky that my RLS is well under control with low dose Buprenorphine.
I always appreciate how others are managing their symptoms. It would be nice to be drug free.
However at the moment I am thankfull that I have a quality of life back.
Thanks so much to the people on this site that have enabled this
I hope you are getting good support and help with your Prostate cancer.
Take care and thanks again :))
All that I've done makes no reported difference in many cases: magnesium didn't even help my brother for example.
And thanks - I've just passed my '2 years in remission' since end of cancer treatment point, and almost 3 years since the mini-stroke. Some other conditions clearly have much more impact on RLS and health generally.
Great that buprenorphine is helping you (and Jools)! Good luck!!
That is really good news Chris. No doubt helped a lot by your diet and lifestyle
Chris, re my response above about trying everything else; apologies I must have confused you with another poster's bio.I was looking at a poster who had tried just about every med' and alternative RLS 'solution'. Not you.
Ah yes, there are quite a few people who have said something like that 🤐
Ha, yes, we are a desperate lot 🤔
Coooool! 👍
Thanks Jools. That's interesting. I looked at the side effects of this medication some time back and recall being scared off it...At the same time, I know someone who takes it as a sleep aid and has no major issues with it.
Yeah me too, I wouldn’t tolerate it 100%.
Interesting, however the potential side effects look dreadful so many of us wouldn’t tolerate it anyway, sadly.
Very interesting.
Good find Jools! Diego Garcia-Borreguero popping up again. Shame he is not easy to get in contact with. Over the last couple of days had some interesting interaction with Jan Ulfberg in Sweden. He has been involved in some of the big publications. Surprised me with a paper on the use of Viagra and related medications for RLS!
Hi! I’d be really interested in hearing about your communication with Jan Ulfberg. I live in Sweden and my rls is not being successfully treated. Have just recently seen his name on a Swedish rls group on fb and am wondering if it’s any use contacting him. I have a severe burning subtype of rls. I’ll post a publication on this. Thank you
Hi e365, He seemed a really decent guy. Responded and shared his research with me virtually immediately and then to a few of my questions. He was part of the international group that made "evidence based recommendations' in 2021. He is open the the idea that RLS is not all in the central nervous system and there is evidence for vascular issues in the periphery (ie legs). It has intrigued me the variable success of physical therapies in the leg. Is it feeding back to the CNS via the nerves as in how TOMAC works. Could there be a vascular component? Apparently Ekbom thought so and even treated people with GTN paste (like for angina).
You are probably familiar with rlsforbundet.se I think was to his clinic - circad.se/circad-halsa/ but I dont speak Swedish. Let us know how you go with him if you do.
Thank you for your reply. I’ll email him. Interesting as I’ve been wondering if it’s vascular in my case. I’ve developed raynauds syndrome last winter after rls started (5 years ago) and also notice my hands turn blue if they are by my side for example when I brush my teeth. I have not brought this up with my gp because basically I feel defeated and he’s very dismissive if I mention weird symptoms
Yes, thank you for the links. I’m aware of the rls group here and googled him and found his clinic. It’s definitely worth a shot because my local gp pushes sifrol….that’s his answer to rls. 😖
Many researchers are looking to 'repurpose' existing drugs. I strongly suspect the drug companies are aware of the increasing awareness among doctors and patients of the dangers of dopamine agonists and they need to find alternative sources of income.I have also written to Dr Garcia Borreguerro, but his colleague replied. He's clearly extremely busy.
I'm trying to speak to a German health journalist about RLS treatment in Germany. They still prescribe Levodopa as first line treatment there. I warned an acquaintance about it when she said her doctor had prescribed it.
But, educating one doctor at a time seems to be the only way to change opinion.
Cheers.
Interesting. Did I miss what does the subjects were given? Also, and for those not in the USA, Consumer Reports is highly respected and takes no outside funding. I think I'll pass "Skip new insomnia drug Belsomra - Consumer Reports" consumerreports.org/cro/new...
But we are not so interested in taking it for insomnia but for RLS. Then it could be worth its weight in gold.
This is very interesting to me Joolsg. I’m in the US and was prescribed Belsomra last July by my neurologist as a sleep aid. I’m always concerned when prescribed any medication as I can’t tolerate most. She told me 5 mg was the lowest dose offered but most people reported such a low dose wasn’t effective. I said, perfect, I’ll take half at 2.5 mg. Since July I’ve been taking it on occasion. I can’t say that it has helped my RLS, although the dose is very low and occasional. But I guess we have to take into consideration I spent 16 years augmenting on a high dose of Ropinirole. It does help my sleep although I find it wears off very quickly, maybe a few hours. A few nights I’ve taken another 2.5 mg to get a few more hours of sleep. At this low dose the only side effect I get is constipation. Alzheimer’s runs in my family and I have a marker for it so I’m curious about Belsomra’s use in that disease.
I'm delighted to hear you have no side effects. It's interesting that you haven't noticed any improvement in RLS.The other study I posted, on brain stimulation, reported that it wasn't as effective on those treated with dopamine agonists! We know that iron infusions and pregabalin are not as effective on patients previously treated with DAs.
Those damned drugs do indeed seem to cause permanent damage.
The drug companies have made sure patients can no longer sue them by placing legal warnings about augmentation and Impulse Control Disorder on the leaflets.
We can't sue now ! If prescribed DA,s. But what about us that have been on them years with no warnings and suffering badly , argumentation?
I did read someone on this forum ?
Had had success with bringing a case against his GP I think ?
Has anyone else that you know of considered legal redress and could you point me to the member who had successfully sued. Thanks Jools 🙂
You can't sue for failure to warn about augmentation as you have to prove negligence and loss of some sort. That's really difficult.You can sue for failure to warn about ICD if you can show the loss ( list of impulse spending buys, gambling losses etc.).
There have been a few cases that went to court, but hundreds settled out of court.
I can give you the lawyer's name.
Angharad Vaughan at Leigh Day in the City. She can't act for augmentation as you have to prove loss or suffering.
But do have a chat with her if you experienced ICD.
well that leaves me out.
yes, good to know.💜
I am sorry I’m a little slow. I have tried that medication two different times and unfortunately as Dr. B calls me a hard nut to crack, it didn’t do a thing for me.
yes, I have unfortunately didn’t help.I’m blessed to have the Buprenorphine.💜
Thank you Jools for posting! I've added this to my list of things to try now that I've RAN from the ropinirole. Hoping because I'd only used 1 mg for 4 months that my circuitry isn't too goofed up 🤞
I did a bit more investigating, and have some hopefully helpful additions:
Another similar, trialled med (orexin antagonists) QUVIVIQ (daridorexant) has recently been approved in the EU & US (Anyone Try or know about availability/accessibility?). . An interesting point follows:
"Daytime functioning (measured using the sleepiness domain of the validated Insomnia Daytime Symptoms and Impacts Questionnaire [IDSIQ]) was significantly (p ≤ 0.05) improved with daridorexant 50 mg"
This may apparently not be only due to the shorter half-life (8 hrs v 12) , but also that Suvorexant binds and dissociates from orexin receptors more slowly than some of the other drugs in the class. To wit, peak concentrations aren't seen until 2-3 hours vs. 1-2 with Daridorexant.
While there's evidence of a more tolerable drug here, a concern would be whether those specific qualities of Suvorexant which make it slower and longer acting, (or other unique qualities of this drug), are important to the therapeutic effects for RLS.
Another potential positive is the anti-depressant potential of these compounds. While it doesn't look like the industry has found the next Effexor, there are some positive indications in the research. This is such welcome news in itself, considering we share a condition that often causes / contributes to depression, yet ironically worsens with most anti-depressants !
Speaking of depressing, the prices for these two are approx $500 / month, ( via Goodrx for Philadelphia, Pa area)! However, this promotion popped up when I searched for QUVIVIQ:
"Get your 30-day supply of QUVIVIQ (25mg or 50mg tablets) for as little as $0 and refills for as little as $25 — even if your prescription is not covered by your insurance company.*"
Also, Goodrx stated that about 50% of medicare Rx plans covers Belsomra/Suvorexant.
I'm optimistic about these options, even more so with the above mentioned Daridorexant and others in the market / pipeline which appear to offer more tolerability and some differences in effects.
finance.yahoo.com/news/euro...
Daridorexant: First Approval
ncbi.nlm.nih.gov/pmc/articl...
nice.org.uk/guidance/ta922/... can be used here in the UK for long term insomnia. So it isn't allowed for RLS, but may be used 'off licence'.
However, there haven't been studies on its use for RLS.
We have a different healthcare system and don't pay for our medicines ( apart from an annual cost of £109 which covers everything).
How long shall I trial codeine before giving up on it?
PRM ( Positional Release Manipulation) and no more drugs !!!
Low Dose dipyridamole?
Most effective medications for suppressing Periodic Limb Movements of Sleep (PLMS)
