I received a telephone call from my GP this morning regarding a request made by my specialist to prescribe Buprenorphine. My GP had to refer to the senior partners of which there are three and it’s only taken them three weeks to make their decision which was NO , even though the request was was backed up by a Specialist in sleep disorders and RLS, doctor Jose Thomas, based in Wales who spoke at RLS-UKs annual general meeting and who I’m seeing privately. The Partners reason for refusing the medication was, it’s addictive, little evidence that it works and anyway they don’t prescribe opiates. I can’t believe the downright ignorance of these Doctors who can’t be bothered to get off their arses and learn about RLS and what it does to sufferers and their families. I am absolutely incandescent with anger and frustration at these people who are so risk averse I’m suprised they have the courage to stick their noses outside their front doors in a morning 😡🤯
I feel now that I need to find another Medical Centre as my relationship with this one is rock bottom. I’m thinking very rude words at the moment so going to stand in the middle of a field and let it all out
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HipHop1972
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Hi Sue, this is a Medical Centre with about 12 GPs but no matter how supportive a particular GP is, and the young lady I’ve been seeing was very supportive but in the end it was the 3 partners who had to make the decision. All this and the amount of information I put together in a file about RLS has been totally ignored. Anyway the pox on them.
I sincerely wish severe RLS on them and any other GP who refuse to help those of us who suffer with this dreadful condition. My gp practice is useless as well, so I feel for you. Mine won't even prescribe Targinact which is approved by nice for rls.
Hello Madlegs1, thanks for your support. My postcode (Uk) is SK96HF. Unfortunately it’s not that easy to change doctors but any help from members in that my are would be gratefully received.
Hi Madlegs1. Not suprised you don’t understand what’s going on in Uk, I don’t think we know ourselves. I know it’s called the United Kingdom but it’s really United. We have England, Scotland, Wales and Northern Island, 4 countries in one with their own governments. We have the National Health Service which covers all 4 but I live in England and my Consultant is in Wales so I’m out of area, my Consultant can recommend but not prescribe directly. The reason I went with Doctor Thomas is that Joolsg knows him and he is one of the few Specialists in the UK who knows what he’s talking about. Well Madlegs1. Bet your glad you asked 🤣🤣 and I hope I got it right 🤔
There's a sleep service clinic at Trafford General Hospital (it's moved from Wythenshawe) who state that they will prescribe low dose opioids as a "third or fourth line of treatment" - presumably if they think everything else has failed. I don't know which opioid they prescribe, and whether you could get a GP to refer you there (or what the waiting list is...)
Hi Madlegs1, I should have checked what country you’re in before sending my reply, I thought you were in the USA. Put it down to my fragile mental state. I’m now crawling back into my darkened room while listening to soft relaxing music to go mad to 🤣🤣
I am not at all surprised to hear this. It's getting worse.GPs just don't learn anything about RLS.
Dr Winkelman set up his opioid register at Massachussetts General Hospital for exactly this reason. To prove low dose opioids used for RLS DO NOT lead to addiction or tolerance. The 500 patients in the study have been on the same low dose for the 5 years of the study. No addiction. We are of course DEPENDENT on our meds. But I'm dependent on my MS meds as well.
It's so obtuse. They had you addicted to high dose Ropinirole which caused severe worsening of RLS and terrible withdrawals, but they think low dose Buprenorphine will cause problems.
It is a medical scandal.
I have asked King's College Hospital to consider trials of Buprenorphine so that it can be prescribed by GPs.
But, so far, no response.
I do hope another surgery will listen to Dr Thomas, a sleep specialist, and look at the Mayo Clinic Algorithm and Dr Winkelman's opioid study.
Jools, I don't think its that they don't learn, but more that they WON'T learn. I got in touch with my gp yet again in desperation, and she phoned me (in a less than two minute phone call) and told me"speak to our pharmacist, she can help as much as me, and it will leave me free to deal with others". Those words are etched on my brain, it is as if my problem is so minor its not worth her time.
I’d be tempted to say “I thought a gp was more qualified than a pharmacist and surely I’m entitled to a decent consultation as much as the next person!”
Utterly disgraceful. I'll say it again, my Multiple Sclerosis is treated as a serious, severe disease. Which it is. However, even with advanced, highly aggressive MS, I can honestly say that severe, refractory RLS is by far the worse of the two diseases.Doctors are completely unaware how serious it is.
Education is vital. They treat it as a minor irritation and that has to change.
That is shocking !! They obviously didn’t look at the latest information about that med. I feel for you. I hope i don’t get that same response from my GP as i am about to be doing the same first a neuro then then hopefully my doctor will prescribe it. Otherwise i will be in that field too.
Hi Elisse3, thanks for your reply. Well they have no excuse as I put a file together and handed it into the surgery, it had everything they needed to know. The GPs were very interested but aparantly the 3 partners are either blind or can’t read.
It is scandalous that some of us can get Buprenorphine without issue get others hit a brick wall- another postcode lottery. As soon as they received the letter from my consultant, my GP have been fantastic in issuing scripts and slowly increasing the dose. Good Luck
When I last mentioned Tramadol here in india to the sleep specialist at supposedly India's premier medical institution, the doc told me they would send me to de-addiction center so you can imagine the hatred I have for some of these doctors.
I am left with no choice but to increase pramipexole and face augmentation.
Hello Heatherlss. I can understand exactly how you are feeling. It’s truly dreadful and leaves you with a feeling of nowhere to go. I wish you luck and hope what you fear will not happen
Do they prescribe Gabapentin and pregabalin. ? Have you tried them before. ? If you can take one of those you can wean yourself off of your pramipexole and take gabapentin or pregabalin It will be hard with the withdrawals and no opiate to help you. Put a post of your own saying what you have said here hopefully you will get members to advise you.
Hi Eliisse3. I augmented on Ropinirole and it took me 13 months to come off it. I was on Nupro patches befor Ropinirole so had been on dopamine agonists for years. Initially Dr Thomas suggested Pregabalin and my GP prescribed it but unfortunately I reacted really badly to it it so had to withdraw from that which is why Dr Thomas suggested my GP prescribe Buprenorphine. Currently the only medication I take for my RLS is Solpadeine Max as the Codeine helps to take the edge off RLS. So this is why I’m really really struggling at night but I’m not giving up the fight.
Like you HIpHop I Have a specialist who THINKS she knows about RLS but after joining this forum & finding out so many different medications & self help ideas every time I see her now I shower her with information to take away & read up on before my next appointment!! If nothing else she ends up referring me to have the tests I know should be done (like the iron ferratin which had never been mentioned before I told her about it)
Is there any where you can contact that can get this 'verdict' overturned -maybe other medical practioners who DO agree with the treatment they have denied you or the GMC or your MP OR.. the newspapers or social media .....sometimes we have to become a nuisance & a pest & make a lot of noise to get what we know is right for us.
wait a minute. You are 78 and they’re worried about you becoming addicted? I am quite angry for you as well. How about being more concerned with your quality of life?
I’ve encountered similar behavior, but from a pharmacist here in the U.S. My Mayo Clinic sleep specialist sent an electronic prescription for oxycodone for RLS and I was ridiculed by the pharmacist for asking that prescription be filled by her. “I’ve never heard of oxycodone being used for that purpose”. At first I was speechless at the ignorance but after my initial shock subsided I told her to “open a book” and left. Btw.. I’m nearly sixty and do not dress or look disheveled or like a street punk.
Some people equate patients on opiates as addicts. I’ve been on opiates for 10y and NEVER abused them. In fact I hate the side effects and the dependency they bring as much as I can’t stand people who judge me for relying on them to treat this miserable disease
So sorry to hear that - that is shocking. I am in Scotland and was given Tramadol by a GP. It has stopped the rls 100%. I have none at the moment. Could that be an option? Not sure if you have tried it?
The only problem with tramadol is that it is the only opioid to cause augmentation. As Hiphop was on Rotigitone AND Ropinirole for years and augmented badly, the tramadol would be a problem.
Thanks Joolsg, was going to look into it but have no desire to go through that 13 months of withdrawal again. Do you know how to go about finding someone who can prescribe medical cannabis. Certainly can’t ask the surgery, they would probably send round a van with people in white coats 😂, They’ve come to take me away Ha Ha as the song went but they may well have to do that 🤣🤣
You had contact with the film company would this experience make it off more interest to them than what I discussed with them previously??
Cannabis is available from any private Cannabis clinic in the UK. Curaleaf is a good start. However, Cannabis helps with sleep, but doesn't stop the RLS. I used it during Ropinirole withdrawal and it knocked me out for 30 mins. But then the RLS started again.
I also used it when on pregabalin and Oxycontin, but my RLS was still very severe. It would give me 3 hours of deep sleep. But the RLS would still break through.
I tried MyAccess Clinic. They are all pretty much the same, I think. I was lucky to get a sympathetic doctor called Rob Forbes. I can only use it occasionally when I need to reset my poor sleep schedule. I only use THC though he went back on himself and suggested using CBD as well, which I refuse to use as for me it seems to cause wakefulness rather than sedation.
Wilful stupidity and a complete dereliction of their duty of care! Proper caution arising from the absence of NICE directives is understandable. But a continuing refusal to prescribe in spite of a.) clear, well-sourced empirical evidence of the efficacy of Buprenorphine over time, backed up by clear evidence of due diligence in respect of research into the risks of dependency, and b.) support from two specialists whose expert judgement protects their sorry arses from personal responsibility is an absolute disgrace. I’m so sorry you’re having to deal with such groundless obduracy. I can only support your decision to change medical centres and I wish you the best of luck in that process. Also fervent hopes that you’ll then get appropriate support from a group of GPs with the wit and the imagination to reach beyond blind protocol.
Can you report them to some authority? The "we dont prescribe opioids" is a total abrogation of responsibility. Doctors take an oath to try and help the afflicted. We need to show them the Mayo algorithm, the reports of Dr Winkelman and his opioid register at Massachussetts General Hospital, the latest (draft) guidelines of the American Association of Sleep Medicine. Your doctor really have a responsibility to practice good, evidence based, consensus best practice medicine. They may be unfamiliar with the latest but once presented with it, if they dont follow it it is unethical behaviour and needs to be dealt with.
Hello Hiphop. Sorry to hear what happened, particularly as I am booked to see Dr Thomas and my opiate paranoid health centre is in Devon.I'm not sure how the system works. Cannot Dr Thomas himself prescribe the Buprenorphine or is being in Wales the problem?
If so maybe I/we should get a referral to a specialist like Dr Frackrell at RUH Bath.
I live in the Uk, my understanding is that Targinact, an opioid is licensed for rls in this country. My GP and pharmacist are marvellous. The drug works very well for me with no addiction issues. I would change surgeries if at all possible. Hope the consultant will help you, mine did.
I'm so sorry about how you were treated. Awful. They obviously do not have your best interest at heart. Getting new doctors is the only way forward. Wishing you the best.
Your first prescription should be able to be given by RLS, doctor Jose Thomas, based in Wales. Once he produces the first one, then you should be able to get repeat prescriptions from your GP.
I wouldn’t give up yet. I agree with all the responses above. What I’d say is write again and lay out what their treatment approach is doing to you and that it is both cruel and unreasonable. At the moment you have no choice but to suffer for the rest of your life as DA’s and pregabalin don’t work for you while buprenorphine is well known to work and has been recommended by a consultant. Buprenorphine carries a much lower risk of addiction than other opioids as as you have seen in the responses above and is actually prescribed in parts of the UK. Write to your MP as well. I’m not sure if patient advocate services could help, see here.
Exactly the same here in Kentucky. I can't find a single GP in the state to fill the order fron the RLS specialist in Tennessee who can not prescribe out of state. I finally went to a friend who is a doctor that writes my prescriptions but does it only for me because he knows me so well. He will retire before long. Say a few of those words for all of us!
I know you want to try Buprenorphine, and I agree it is a better option for refractory RLS after dopamine agonists and pregabalin have failed.
But, your surgery cannot refuse opioids. Targinact is licensed for RLS.
The only problem with Targinact is its short half life. It's supposed to last 12 hours, but many people with RLS find it only lasts 4 hours and then causes mini opioid withdrawals. However, some people find it works well taken twice a day.
Show your surgery the link above. If they refuse to comply with NICE guidance, consider reporting them to the GMC and also consider legal action for breach ofc duty.
If they won't even consult NICE guidance, they are not acting in the their patients' best interests.
Like you, I'm becoming VERY angry with some GPs. They were happy to overprescribe Ropinirole and probably cause permanent damage to your brain, but now they won't listen to a sleep specialist and help you.
I understand your frustration, I finally had an appointment with the neurologist only had to wait eight months, they were very good. Listen to all my problems and with the situation I was facing my lack of sleep, pain in legs constantly and overall a very poor quality of life.
After two appointments and blood tests, they finally agreed that I would benefit from an iron infusion, the request was sent to my GP who refused as I’m not classed as anaemic
GPs do not understand or wish to learn, or listen.
Was it your doctor who referred you to the neuro ? Then refuses the neuro’s finding and what you need !!! If so what was the point of that neuro appointment. 😡
I’m sorry that you are having such a bad experience with your GP practice- you shouldn’t have to change to another practice but I guess it might be the only way forward. I wish you all the best.
I'm 75 and I take my RLS meds at 5 pm, if I forget to take them around 7-8 pm my RLS starts kicking in and I quickly take my pill. Unfortunately it takes two hours for relief to began. I found a 10mg Norco (opiate) works in 15 minutes. My doctor is also one of those that has left patient concerns behind to conform with government pressure. I went the route of buying them elsewhere, a little pricey but no questions asked, no blood test periodically and no lecture. It only happens a couple of times a month of less. What we all need is a doctor that has severe RLS himself!
How frustrating! I'm sorry that was the outcome. Here in Wisconsin, USA, I was frustrated last year when an adult son was staying with us. He's 43 and has had a lifelong history of drug abuse; first opioids, for which he was treated for years with methadone, then he got addicted to meth, which ended him up in prison for 4 years. Very shortly after he got out, he had suboxone prescribed for him by a doctor he barely knew, as he still had cravings for opioids. I think he should've received drug treatment and mental health therapy, but the suboxone was a quick fix. Then there are people like you and others with RLS, who have suffered for years and can't receive the treatment that very likely would alleviate symptoms! It is so messed up!!
Hello Marzipana. Thanks for your reply and what a very sad storey and it must be so very hard for you, you love your son and want the best help you can get for him as he obviously can’t help his addiction as we can’t help our RLS affliction.
How frustrating! I'm sorry that was the outcome. Here in Wisconsin, USA, I was frustrated last year when an adult son was staying with us. He's 43 and has had a lifelong history of drug abuse; first opioids, for which he was treated for years with methadone, then he got addicted to meth, which ended him up in prison for 4 years. Very shortly after he got out, he had suboxone prescribed for him by a doctor he barely knew, as he still had cravings for opioids. I think he should've received drug treatment and mental health therapy, but the suboxone was a quick fix. Then there are people like you and others with RLS, who have suffered for years and can't receive the treatment that very likely would alleviate symptoms! It is so messed up!!
oh no! Hip hop 😢 it’s absolutely awful the way we are treated . As you know I have too been to hell and back and the only way I’ve been able to get the buprenorphine is by becoming an addict , 28 days in rehab and put on it as a type of opioid substitution therapy. They now keep telling me to gradually taper off but I’ve told them that it’s working for me and my RLS and I’m quite happy staying on it thank you. Shouldn’t have to go to that extreme I know, but by uneducated Doctors prescribing other medication that causes harm actually ended me up in this mess!!!!! U get desperate and destroyed . I’m not sure what to advise as the way I went about it isn’t ideal for anyone , but they don’t even learn from cases like mine 😢. Perhaps change GP surgeries and see if they will consider it . Bless you , it’s absolutely shocking the treatment we get
Oh my God Lola43, you don’t do things by half do you, very extreme but glad it worked for you. It did cross my mind, but definitely won’t be going down that route.
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