Dragging a millstone up a mountain. RLS blind spot, patient’s apparently don’t know best.

[HipHop1972]

Hello friends, it’s a while since my last post but was waiting until I had some good news to share with you all but as the title of the post indicates the opposite.

I have a wonderful Consultant Dr Jose Thomas who specialises in sleep disorders and RLS, the downside is he is based in Wales uk and I am in England uk and as the National Health Service operates independently in both areas he is only able to recommend treatment and medication but can’t prescribe it. He has written to my GP with the results of the tests he ha carried out and confirms I’m suffering severe RLS and augmentation due to the use of Dopamine Agonists prescribed years ago through my GP. My GP so is very supportive of the recommendations issued by Dr Jose Thomas has had to refer the matter to the GP Partners of which there are 3. They class Buprenorphine as a grey drug meaning little evidence that it is an effective treatment for RLS. It took me 30 seconds to Google Buprenorphine RLS treatment and found no end of reports of it helping.

My GP will be speaking to the partners again next week where I hope to receive a positive outcome. There is a particular Partner that I don’t get on with and in his early days with the medical practice I had cause to speak to the then Partner about his attitude towards me, impatient, no bedside manner at all and with a reputation of getting through a huge list of patients in a short time, He stands throughout the consultation never sitting down so rightly or wrongly feel he may have taken exception to me disturbing info on the Mayo Clinic about RLS, treatment and their Algorithm.

It doesn’t take 10 days to review and make a decision and wonder if my file hat been flagged (trouble maker) I’ve been a patient at the practice for 45 years and an additional 10 years before the practice was taken over and now highlights on a TV screen in reception all their achievements and numbers of patients seen and treated in a year. Maybe they are more interested in numbers than individuals although I have received excellent treatment in the past for other ailments but think I’ve hit a wall with those making the final decision, not the day to day GPs who are excellent.

[Madlegs1]

Stand your ground.

All research supports you.

[HipHop1972 in reply to Madlegs1]

Thanks for reply Madlegs1, I certainly will.

Regards HipHop1972

[LotteM]

There is recent evidence, although not the ‘standard’ double-blind, placebo-controlled trial. It is the middle of the night (5AM), I can’t sleep (no symptoms, though), and I don’t want to get out of bed to my laptop. But I can send links to several recently published studies later today. Both buprenorphine and methadone are long-acting effective 2nd line meds for RLS. Some doctors may be more willing to prescribe methadone (mostly usa based, is my impression), others more easily turn to buprenorphine (EU and UK based). But, well, you noticed, some are ‘difficult’.

I hope your worries will not come true and you’ll get the buprenorphine and that it works well for you.

Remind me if I forget to send the links.

[HipHop1972 in reply to LotteM]

Thank you so much LotteM, that would be useful. I’m just going back to bed hopefully to get a couple of hours sleep. I hope you get some more sleep also.

Kind regards HipHop1972

[LotteM in reply to HipHop1972]

Berkowski et al (2023) Longitudinal assessment of buprenorphine effectiveness for severe RLS and dopaminergic augmentation (academic.oup.com/sleep/arti...

Forbes et al (2019) Buprenorphine-naloxone treatment of refractory RLS (academic.oup.com/sleep/arti...

Winkelman et al (2023) Long-term safety, dose stability, and efficacy of opioids for patients with RLS in the National Opioid Registry (pubmed.ncbi.nlm.nih.gov/366...

And finally. Not specifically for RLS, but two good and fairly recent reviews of buprenorphine and its use: Khanna & Pillarisetti (2015) Buprenorphine - an attractive opiod with underutilized potential in the treatment of chronic pain (ncbi.nlm.nih.gov/pmc/articl... and Pergolizzi & Raffa (2019) Safety and efficacy of the unique opioid buprenorphine for the treatment of chronic pain (pubmed.ncbi.nlm.nih.gov/319...

I didn't check thoroughly, but it seemed at a glance that most (all?) listed papers (full papers, not just summary) are freely available.

And a study on methadone for RLS: Silver et al (2011) A 10-year longitudinal assessment of DAs and methadone in the treatment of RLS (pubmed.ncbi.nlm.nih.gov/212...

Good luck.

[ChrisColumbus]

You may have already read the following, but hopefully taken with what LotteM sends you it will help:

healthunlocked.com/rlsuk/po...

[Munroist]

We have many sufferers on the forum whose RLS is well controlled by buprenorphine and there are many doctors who will prescribe it. It is much less addictive than other opioids and in fact is used to help people get off opioids. If nothing else helps your RLS then faced with a lifetime of sleep deprivation and all the psychological and physiological problems that brings I can’t see why they wouldn’t at least try it and proceed on the basis of results. I have the same view that many doctors dislike patients who disagree or suggest alternatives and can be obstructive or unhelpful. They seem to like black and white decisions and If we know anything about RLS it’s that it can be very different for different people and some will benefit from one treatment which will be intolerable or ineffective for others. Currently we have 3 main medical tools which are iron supplements, pregablin/gabapentin and buprenorphine and they should just try them in that order to see which works. Good luck and try to remain positive and constructive.

[HipHop1972 in reply to Munroist]

Thank you Munroist, glad I’m not alone in my my feelings about providing the medical profession with information they don’t know about. Will keep pressing on

[Joolsg]

They are dinosaurs.The good news is that Dr Andy Berkowski will release another study on Buprenorphine soon . It has been.delayed because he has been working so hard on the new AAS guidelines.

I do hope the GPs reach a sensible decision.

Your quality of life would improve dramatically on Buprenorphine. A sleep specialist has recommended it.

But it does indicate that we desperately need a UK trial of Buprenorphine asap.

[HipHop1972 in reply to Joolsg]

Thanks Joolsg. They are dinosaurs and look what happened to them 🤭. I must just have to rely on my GP putting a good argument together in support of Dr Jose Thomas letter. I have requested that Dr Thomas writes to the GP Partners and provide them with links to reports supporting the use of Buprenorphine. I could do this but think I’ve annoyed one particular Partner who’s a bit a Prima Donna enough in providing info about RLS and treatment to the surgery as patients are not permitted to know more about a particular subject than a trained physician. Wake up and smell the coffee!!

Roll on the Revolution 🤯

[SueJohnson in reply to HipHop1972]

My laugh for the day - "and look what happened to them"😀

[Joolsg]

😂Remember Wolfy Smith of the Tooting Popular Front? I live just up the road!

[Elisse3 in reply to Joolsg]

I loved that programme 😊. I also knew Tooting many years ago i lived between Mitcham and Streatham

[HipHop1972 in reply to Elisse3]

Well that reply from Joolsg has obviously unlocked memories, maybe I just wasn’t reactionary enough and now need to be enlightened.

Regards HipHop1972

[Joolsg in reply to Elisse3]

Know it well. My son used to live there.

[HipHop1972 in reply to Joolsg]

Respect Joolsg, only vaguely remember Citizen Smith, but going to buy a beret and fake fur coat for next time I visit the surgery 🤣.

I wondered where you got your zeal from, now I know and love it 👍🤣🤭

[Elisse3 in reply to HipHop1972]

That made me laugh i now have a pic in my head of a look alike sitting in the doctor’s surgery. 😁

[ChrisColumbus in reply to Joolsg]

POWER TO THE PEOPLE!

I used to cycle to work in Central London: Raynes Park, South Wimbledon, Colliers Wood, Tooting, Balham, Clapham, Kennington etc. Of course, it was the mid 70s and both the roads and my body were somewhat different.