Research on use of opiods for RLS

[Jumpey]

Hi, I want to send my doctor info on the effective and safe use of opioids for RLS. Do you have any suggestions? Preferably UK based research. Thanks in advance.

[billy_in_slo]

Try this, recently updated and well written and easy to understand. mayoclinicproceedings.org/a...

[Jumpey in reply to billy_in_slo]

Cheers.

[ChrisColumbus]

While research I'm aware of is US based   Joolsg may have something more pertinent from the UK. Meanwhile, you're probably already aware of the following 3 pieces (the first while being from RLS UK also references a US study):

1. "Where first line treatments have failed due to adverse effects or augmentation, low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored. The Massachusetts General Hospital Opioid Study shows that long term, low dose opioids used in RLS do not lead to an increase in dose over long periods of time. (National RLS Opioid Registry (massgeneral.org). Opioids should not be withheld due to fear of tolerance or dependence as they can result in complete resolution of refractory RLS and improved quality of life.

In the UK, Oxycodone is licensed for RLS, but codeine, tramadol and buprenorphine can be prescribed off licence. Most general Practitioners may be reluctant to prescribe opioids without the supervision of a neurologist.

Tramadol is the only opioid that can cause augmentation and worsening of symptoms should be monitored.

Common side effects of nausea, skin itching, sweating and anxiety should be monitored and treated accordingly"

FROM: rls-uk.org/medical-treatments

2. "Low-dose opioid medications continue to adequately control symptoms of refractory RLS over 2 years of follow-up in most of the participants."

FROM:

neurology.org/doi/10.1212/W...

3. "Opioids are highly effective in the management of refractory RLS, reducing daytime tiredness and improving sleep and quality of life, and thus should not be withheld from appropriately screened patients because of a fear of potential development of tolerance or dependence.

When opioids are used appropriately for RLS, escalation of dose is uncommon, and misuse is infrequent in the absence of a history of substance abuse"

FROM:

mayoclinicproceedings.org/a...

From the Algorithm: Table 4 - Suggested Doses for Opioids in Restless Legs Syndrome

mayoclinicproceedings.org/a...

[Madlegs1 in reply to ChrisColumbus]

This should be pinned.

Great resource.

[Kaarina Administrator in reply to Madlegs1]

This is now a Pinned Post.

[Jumpey in reply to ChrisColumbus]

Thanks so much.

[ChrisColumbus in reply to Jumpey]

I've updated my Reply with a direct link to the Table 4 from the Mayo Algorithm which I referenced (couldn't do that from my phone, worked from my laptop)

[Joolsg]

nice.org.uk/advice/esnm67/c...

At present, only Targinact has been studied for RLS in the UK and NICE produced this guidance in 2015.

Professor Chaudhuri at King's did tell me that he did studies on hydrocodone, but I have been unable to find them.

I'm currently trying to find a doctor or hospital to carry out Phase 1 trials of Buprenorphine in the UK. Dr Jose Thomas at Gwent Sleep Clinic was initially very interested, but as he is based in Wales, prescribing Buprenorphine to English study patients would be extremely difficult.

Professor Alistair Norse at Bart's can take part in phase 2 trials, but they don't have capacity for phase 1.

Professor Chaudhuri hasn't replied to three of my emails asking if King's will do the trials.

So, there's very little UK research, but lots of evidence from the US.

The Massachussetts Opioid study and Dr Berkowski recently did a Buprenorphine study. Links to both attached.

Your GP could also take into account the people on here in the UK who are on opioids. I've been on 0.4mg Buprenorphine since June 2021. No increase in dose. No addiction issues. Obviously I'm dependent on Buprenorphine in the same way that others are dependent on pregabalin or dopamine agonists. My GP agreed to a 3 week trial. As the results were miraculous from Day 1, she has kept me on it ever since. I went from 38/40 to 0/40 on the IRLSS severity chart.

mayoclinicproceedings.org/a...

academic.oup.com/sleep/arti...

[ChrisColumbus in reply to Joolsg]

Am I wrong in remembering that someone (poss Prof Walker?) suggested that they would need £100k to start a trial?

[Joolsg in reply to ChrisColumbus]

Professor Chaudhuri told me he would need £100,000 for a trial. But he's not responding to my emails.I'll call King's in the New Year and try to speak to his secretary.

I'm pretty sure we can raise the funds, but we need a research team.

[ChrisColumbus in reply to Joolsg]

He may have been at a Parkinson's meeting in Austin, Texas, around the end of November/ beginning of this month (he was certainly speaking on 3/12), and perhaps he's taken a winter break somewhere since... Whatever, hopefully he'll get back to you!

[Joolsg in reply to ChrisColumbus]

Thanks Chris. It's almost impossible to get responses from UK neurologists. Yet Dr Buchfuhrer and Dr Berkowski respond within hours from the USA!

[restlessnana6 in reply to Joolsg]

Dr Buchfuhrer and Dr Berkowski are two of our fine physians working with research and patients. Fortunately we have quite a few others who are working with patients and making a difference also. Dr Winkleman's Opiod registry is one outstanding resource, the algorithm from the Mayo Clinic is another one the US doctors are looking at as the treatment model. Chris has quoted all the best work that we currently have. Others are continuing to research other ways. Listen to what Chris is saying you can't go wrong. I know how frustrating waiting is, I spent many years looking gor answers. I was super fortunate to go to the Mayo Clinic and the i was living in the right state to be treated by Dr Berkowski. I know how fortunate I am and I feel your frustration. Best of luck and Merry Christmas!

[Joolsg in reply to restlessnana6]

Yes, Dr Winkelman also responds quickly to queries. Many of us on here ( me and Madlegs) are part of the Massachussetts General Hospital Opioid registry and have been from the beginning. Even though we are the other side of the pond.

[Jumpey in reply to Joolsg]

That's helpful Jools. I've already found the NICE guidelines and research on oxycodone. I'm actually under Jose Thomas.He asked me to forward the research on Oxycodone to him, which I have.

[67Waterman]

Well done Billy - the Mayo Algorithm is the best evidence to be given to GP's etc.

Just to give you hope, I have been through years of dopamine agonists, then Gabapentin, then Pregabalin ... I finally have found a solution that works for me thanks to Professor Walker at Queen Square ... 10 mg Oxycodone (Longtec) and 150mg Pregabalin. I had no side effects. Well worth pursuing.