Some of you may be aware that I have been trying to get a trial of Buprenorphine for refractory RLS underway in the UK over the last 2 years.I initially contacted Dr Jose Thomas and his team at Aneurin Bevan Hospital trust in Wales and then Bart's Hospital neurology department and King's College RLS Clinic.
I am very sad to report that all three Hospitals have now advised me that they cannot do trials. Bart's did agree to be part of stage 2 or 3 trials if I could find a centre for stage 1 trials. King's sent me an update on Monday.
So, back to the drawing board.
Dr Berkowski, in the USA, has done a study on Buprenorphine, but it doesn't meet the strict research trial criteria to enable it to be licensed for RLS.
Even if we do get a trial AND Buprenorphine is licensed for RLS in the UK, it would not guarantee a prescription. We have had cases recently where members have been refused Targinact, which IS already licensed for RLS.
The opioid bias seems to overrule common sense, compassionate prescribing.
If anyone knows of a possible drug research contact, please do let me know.
I think it may be time for another wholescale CAMPAIGN to force NICE to update RLS guidance and get RLS on the teaching curriculum.
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Joolsg
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That is sad. Why is buprenorphine an opiate different from us taking any other opiates expect targinact which seems to need a neuro to give doctors permission to use. Do you think Dr Early might know of anyone who can take it up or Dr B ?
I've already been in touch with Dr Berkowski who was delighted that I was trying to get a controlled trial of Buprenorphine under way, as it could then be used in the USA.But sadly, it doesn't work the other way. US trials are NOT accepted in the UK.
They don’t do any research on RLS in this country as far as i know they rely on other countries to do the the research and trials then we get to use them when they get approved. BUT some meds are used off label here. This county is rubbish where RLS is concerned
You're correct. But Targinact was trialled here and is licensed by NICE. But, as you have realised, GPs ignore the trial and the licence.Pregabalin and gabapentin are prescribed 'off licence' but even those drugs are sometimes refused.
MHRA has to approve any drug trials in the UK. MHRA will not accept dryg trials carried out elsewhere, so any US trials will not benefit UK patients.
If we do go for another campaign, it will be all hands on deck and we need to reach all the other UK groups on Facebook and elsewhere.Any and all help would be great.
Hi smilingjane i am on fb and belong to a couple of fb RLS groups. There are many such groups some are better than others. I can post on the ones i belong to when Jools is ready. 😊
Thank you so much for trying Jools. I really appreciate everything that you do to try to make the medical profession aware of what we go through. I thought that they were supposed to be compassionate. That's a joke !!If you need petition's signed etc. then , please,let me know.
Me again! I thought that I would let you know that I'm going to write to a Neurologist I saw at our hospital about 15 year's ago about a bad tremor in my right hand. He was so thorough then and gave me a brain scan quickly to check for Parkinson's and he was so empathetic. I don't have Parkinson's and he diagnosed Essential tremor but he said I could contact him if I ever needed to. He , probably, didn't think that it would be 15 year's on and I don't know whether he deals with RLS but I thought that it would be worth contacting him and getting his input on what you have told us. I have asked my Dr. to refer me to see the Neurologist but with hospital waiting times here , that could take week's or month's! I will let you know what he says. xx
Sounds excellent. We need neurologists on side. My MS team at St George's are wonderful and no longer prescribe dopamine agonists.Bart's say they also no longer prescribe dopamine agonists for RLS and they will prescribe Methadone.
We will get through to them, especially the younger ones who are willing to learn.
I really hope so Jools. I like your confidence but I'm afraid I don't share it....not where I live but I am going to write to my Neurologist tomorrow so , as soon as I hear from him ....if I do....I will let you know. Apparently medical people don't want to work at our hospital because it has such a bad reputation 😒! The Nurses told me that ! Scary! Sleep well and have a rest ! You fight so hard for all of us. Thank you. xx
Hi Jools . I'm in complete shock and I'm, actually crying! I just received an email from the Specialist Nurse at the Pain Clinic to say that they had received my email ( pretty growly one where I threw the cancer misdiagnosis at them ...and now the refusal of Buprenorphine tablet's ! ) and their Consultant has decided to give me a trial for a month of the Buprenorphine tablet's!! The Consultant has written to my G.P. to tell him but of course, my G.P. is on holiday till Monday! However, I'm going to phone the Surgery tomorrow and speak to another Dr. !I'm in total shock but why does it take for me to have to get incredibly depressed and furious for the Pain Clinic ( who, as I've said before, have never met me ! ) before I can get tablet's which will, hopefully, save not only my sanity but help me to get some of my life back? I have, absolutely, no respect for our Pain Clinic despite this result. If I hadn't fought hard then I wouldn't have got them. I am not going to give up fighting for other's and I will help you in your battle in any way I can. Maybe I will get half of my life back even though the misdiagnosis has left me with other problems. I have some hope now. Thank you (and other's ) for all of your help, advice and support but for that I dread to think what I would have done! I will report back. Now I'm crying again 😢 😭 🤧!!! Relief though!
Thank you Sue. What a fight it's been and probably, not completely over because this is a month's trial! I rang the Surgery today but the Pain Clinic email about the tablet's has gone directly to the Head of our Surgery and they can't access it so , I have to wait till my Dr. gets back on Monday before I can get the prescription! I hope he enjoyed his holiday. I hardly ever leave our house unless it's to go to the Dr. or hospital......holiday? What's that ?! I just hope that I can tolerate the tablet's. There shouldn't be a problem changing should there ?I wouldn't have got here without your help and advice and from Jools and other's so, thank you SO much. 😊 I , still, intend to email M.P.s and MSP's about this situation because it has to get better for everybody. I will let you know whether I get a response.
Take care Sue and thank you again. All the best, Danni
We RLS suffers have always been an isolated outpost for the medical community. For some reason many doctors don't take seriously the painful place many of us often find ourselves. I don't know why. It only takes a couple of hours reading these threads to understand that so many are needlessly suffering. It is a sad indictment of the medical establishment.
Thank you Jools for all that you do. For me, you and many others on this site, have been a godsend. Rivers
Sorry to read that, but thanks for your on going efforts on behalf of us all, and I write as someone denied any chance of trying Targinact during a recent tel. call with GP. It might be time to invade Euston Sq.
That is really, really worrying. It's licensed for RLS! What reason did your GP give?So many GP surgeries seem to operate according to their own rules.
Well my GP of 30+ years the senior at a large Practice mentioned the Opioid Crisis which we all know about, and said that he would only sanction/prescribe an Opioid (other than Dihydrocodeine ) for Cancer.
Fascinating that he is male and older and therefore unaware that low dose opioids are safe, effective and do NOT lead to tolerance or addiction (unless there's a history of abuse). Maybe send him the Massachussetts Opioid Study for his bedtime reading? Or better still, change GP practice?
That is totally bizarre and so unfair, wish you could find another doctor. The patient information leaflet for targinact includes dosage information for rls. I am in Plymouth and have no problem with my prescription.
I do think that may have to happen. We will all be arrested because peaceful protest seems to have been outlawed by the current Gov. But I'm up for it.
Well the truth is I`ve long harboured a fantasy of an all night vigil outside the RCGP, being there as they all stream out at 5/6ish and still there the following morning, the thought of having a reason to stand about occasionally stamping a foot without having to worry about how I was going to get any sleep that night has long kept me amused as I march round my house in the early hours, but the harsh reality is I fear with other issues to deal with as most of us have, for me it will have to remain just as a fantasy.
Oh my dear Joolsg, I can’t imagine how disappointed and let down you must feel. I don’t know anyone who has put so much effort into persuading, Cajoling and bullying the UK medical professionals into understanding the affects RLS has on sufferers their families and mental health.
I’m sure we all feel the same level of gratitude for everything you are attempting to achieve
Perhaps we need a demonstration somewhere prominent (10 Downing Street ) byall of us inflicted with RLS. that would get the word out and some headlines in national newspapers about how backward our GPs are. A bit of a generalisation as I know there are some very caring and enlightened medical professionals out there. 🤬🤬
Me too. Unfortunately not well enough to get there and I do email's but they just ignore them. However, will try our local M.P. who likes his voice to be heard in Parliament! Mr. Blackford! Don't say anything please because I know!! Friend's are also on the case ! Flooding M.P.'s with email's might help though I'm sceptical and cynical now about medic's and M.P.'s !!
That is very disappointing Jools, after all your hard work. It must be so demoralising to constantly meet with such opposition. It really does seem a non-progressive health system that you have over there, at least in relation to RLS / PLMD.
I’m so very sorry that to date your efforts to initiate trials into Buprenorphine as a licensed treatment for RLS/PLMD have foundered. Knowing as we do here that the reasons for refusal arise not from counter-evidence as the medication’s efficacy but instead are grounded in wilful ignorance and entrenched prejudice, our faith in our battered old NHS is shaken further still. I think you’re right: it is time to mount another campaign to force NICE to wake up to the need for a revolution in the treatment of RLS/PLMD. Attempts to win skirmishes in respect of specific medication - their fundamental flaws or their mighty potential - are always going to fail for as long as general practice is denied vital data at training level.
Thanks Jools for all your hard work. I am currently under Jose Thomas.He is definitely not against opioid use generally.He prescribes off licence. It's a shame he couldn't conduct a trial.
He's brilliant. But constrained by the difficult UK prescribing laws. Even if he recommends a treatment, GPs refuse to prescribe. As he is in Wales he can't issue a prescription for England. HipHop is experiencing this problem.
Maybe we need to do as some PD sufferers are going to do going to London with a petition to make a fuss on how people with Parkinson’s Disease are not getting the treatment they need. They do have two ex journalists known to the BBC who have PD going along.
It is dire, that they won’t do a trial with buprenorphine but Chaudhuri is seriously considering a trial using apomorphine,( the first DA launched back in 1970) .
This is nuts! Also are Barts going to trial methadone as you said they are going to use it? I don’t know why they don’t consider doing a double blind random controlled etc trial with both methadone and buprenorphine. It makes good sense.
No.. They use methadone off licence. No trials planned.However, as so many UK GPs are refusing point blank to prescribe ANY opioids, including Targinact, which is ALREADY licensed, it seems a trial of Buprenorphine would not help anyone with a dinosaur GP.
This opioid bias is going to have MASSIVE effects and needs to be tackled . But it means fighting the USA and Canada which is an almost insurmountable task at least in the next ~ 5+ years.. we are a bit stuffed 😱😜…
I'm so sorry to hear that. There have been no other reports of increase in severity of RLS on Buprenorphine. Were you on pills or patches? The patches DO stop working after 4 days ( they don't last 7 days) and many report breakthrough RLS at day 4/5.
Are you on any other medication? Were you on dopamine agonists? And is your serum ferritin above 100ųg/200ųg/L.I've read your previous replies to posts and you mention you are on a quarter of a pill, so I am assuming you are in the USA?
Dr Winkelman is clear that an upwards adjustment is often needed in the first year.
O.5mg is a low dose. 1-1.5mg is the averave effective dose.
Augmentation is NOT the same as tolerance.
You may have to increase to 0.6mg or 0.8mg. Here in the UK we have 0.2mg pills so can titrate up more easily.
1mg is still an average dose and hopefully will cover the increased RLS.
Thank you Joolsg for all your efforts to help us with RLS . Its crazy we can't get the help we need . I've had alot of help from this group and reccomended it to others in our position. In the UK if your a drug addict you can queue up at the chemist around 5 ish each day then go into a little room where they give you your dose of Methadone !! Imagine that for RLS sufferers who just want a normal life to be able to sleep and go tonwork not totally drained . It's ridiculous . I know theres a lady on here that actually became a drug addict in her country so she could get to the stage of getting the help she needed and proving to her doctors that it helped her RLS . What a thing to have to do just to get help . RLS is torture it can drive you mad and suicidal yet they don't want to know !!!
I've even considered that before I managed to get Buprenorphine!!! Most RLS patients are in their 50s, 60s,70s and 80s. We are NOT drug seeking addicts.
In fact, the nearest I came to addiction was on Ropinirole. I used to panic if supply was unavailable. And the withdrawal was hell on earth. Yet GPs think dopamine agonists are safe, but Buprenorphine is dangerous.
I know it's mental . All this rubbish about being addictive . We are taking it because we have a medical problem not as recreational drugs !! It's a low dose and believe me if I could get off all the tablets om on for thyroid amd stomach problems etc i would . Yes u may get the odd person who abuses it but that's the same with everything in life. Why do drug addicts getvso much help and we don't. I'm not having a go at them personally but most of us just want some sleep so we can function and go to work and live a life. If that means being on an opioid for life then so be it. Otherwise their suicide rate will go up . My doctor actually put me in touch with another patient that had RLS as severe as me . It was obviously agreed. I offered ro talk with him as I understood wot he was going through . He s now on the patches and seems OK. I told him about this group to. I've been ok since I started Bupromorphine but just had a knee replacement and been on stronger drugs. Now I'm off them and back to Bupromorphine the Rls has come back a bit . I was sat punching my calves the other nite as it was drivin me nuts . Have u heard of DMSO ? It s in liquid form and it good for loads of problems when I've recovered from my knee op I'm gonna try it for RLS
Any joint replacement op will trigger/worsen RLS, but it should settle.Remember the anti nausea meds thet use can worsen RLS, so best to check in advance and ask for zofran. I've actually used DSMO in gel form for my MS knee pain. My sister recommended it. I'm not sure it helped.
My op was 1st march so not had anti sick meds for a while . I was on stro g pain killers and morphiene as I've built up an immunity to them and need more maybe than the average person . Its a painful op . Had it done twice on the other knee !! Dmso is a natural product made from trees its Dimethyl sulfoxide Google it x
Me again I missed the bit where u said u had used DMSO gel . I use the liquid form amd apply to skin its only 70b% so ubcan the 109% needs diluting. It can be invested which I've not tried yet and is meant to be good for inflammation and many other things . If I get any success I will let u know
I'm absolutely gutted to read this. When will the medical profession accept this for what it is - a life altering condition?
I can honestly say I don't how I could survive without my Buprenorphine (or an equally effective replacement). My life, what I do and where I go, is impacted by my RLS. This drug has literally saved my life.
Totally agree. I had calmly and logically decided to end it all after 5 years on pregabalin and Oxycontin. My RLS was still very severe, 38/40. I dreaded night time.Buprenorphine worked miraculously the first night. 3 years later, still zero RLS.
I’m so sorry to read this Joolsg! You have put so much effort into the cause. It is so frustrating that this disease is not being taken seriously by medical professionals around the world.
on a slightly different note, I actually got to see Professor Walker in February this year, saved up and am so glad I did. What a great man and I think I was quite shocked at how he really understands RLS. He wrote to my GP regarding me coming off Pramipexole and has asked for me to be prescribed Targinact (although I told him the problems I had experienced previously with trying to get this prescribed). He did also advise that Oral Buprenorphine is a good alternative if Targinact is not possible to prescribe. (I loved that) He also requested that my ferritin be checked and my antidepressant be changed as the one I’m on is no good for restless legs.
This letter was typed and sent to my GP 12/02/24. I received a copy via email. Knowing my GP practice better than I’d like I printed a copy and delivered by hand.
The earliest appointment I could get to discuss these changes is believe it or not tomorrow!
Finally Professor Walker asked that I be referred to him under the NHS. Needless to say this hasn’t happened either. I feel an in-depth conversation with my GP is needed.
Just for info’ had my second hip replacement on 20/03/24 and ended up discharging myself because the staff have NO understanding of RLS at all and wanted to keep me in bed for 12 hours! This happened 2 years ago with my other hip too. That was very traumatic and I still get the shakes and palpitations when I think about it, but this time I made sure my husband stayed with me.
It really is a case of bashing heads against brick walls just trying to get someone to listen.
The irony here is that the reason opioids are considered dangerous is because they can start a vicious cycle of dependency, overuse, and agonizing withdrawal. Does this sound familiar? And yet dopamine agonists are OK? Lives have been ruined or lost, and we are scoffed at for raising the alarm.
Jools, do any of these hospitals give a reason for their refusal? Is it simply that they feel trials aren't necessary or justified? Will they not entertain an appeal, or is their decision final?
Aneurin Bevan research team felt it wasn't suitable as a main trial Centre AND prescribing between Wales and England would be an added complication.Bart's explained 6 months ago that they didn't have any trial capacity BUT they would assist in stage 2 or 3 trials.
King's emailed me on Tuesday to say that because of ethics/cost/workload they would be unable to do trials.
I had said I would probably be able to raise funds. Not sure what 'ethics' are involved, maybe how you measure Buprenorphine against lower efficacy drugs? But workload is a real issue. As we all know, the NHS is literally falling apart.
So, I may go back to the MS Society and the Parkinson's society. They have millions in funds for research and 30% of MS & Parkinson's patients also have RLS.
They've refused to engage in the past, but maybe the research team has changed.
I've asked the big pharmaceutical companies, Sandoz, Accord and one other, but Buprenorphine is a cheap drug & there isn't any money in it for them.
So, we will need other hospitals or research bodies.
It's such a specialist area. I wish I knew someone in that world. Maybe a member of this forum has a contact in the world of big pharma. But as you say, it's all about money, and this one isn't going to lead to $$$. Thank you for working so hard on this Jools.
so sorry to hear about the bias related to that particular medicine. I take Suboxone and without it I would not have a life. i wake up in the morning in horrible pain including nerve pain. once i take my medicine i have a full day of activities. I don’t understand the bias related to opioids. yes, some people use it in the wrong way but there are thousands in pain who just want a life. these medicines are critical to folks in pain every minute of the day !! good luck to you
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