Hello friends, just as I was beginning to believe that having found Doctor Christopher Murphy and that that the trip through the tunnel had ended in brilliant sunshine, I was wrong. Not in my choice of Consultant Dr C Murphy who was and still is wonderful but in the final reaction to Buprenorphine 7 day patches. Initially results were brilliant and life was as good as it gets the storm clouds started appearing, not that I had side effects, I didn’t, apart from the effects on my skin, itching, red raw areas where patches were installed and a downturn in their effectiveness. It appeared my skin was no longer absorbing the medication in the patch so I had change more regularly and frequently until they were only about 10% effective meaning I was virtually back to square one. Having contacted Doctor Murphy by email explaining the situation and discovering he was on holiday and then was off Ill, and no one else at the hospital could assist me I made an appointment to see him again privately as the whole thing was becoming extremely confused. Anyway the upshot was that he agreed to try me on Buprenorphine tablets and agreed to phone me this morning Friday 6 January and the news was not good as he informed me that Salford Royal Hospital no longer had Buprenorphine in their Pharmacy and that it would not be available by prescription in any form from the Hospital and as my GP refuses to prescribe it you can understand why I said storm clouds are brewing. Doctor Murphy was absolutely furious that modern GPs refused to acknowledge that there are areas in medical knowledge that they know nothing about and although it’s provided for them there arrogance will not allow them to admit it may be true. I know that doesn’t apply to all GPs as I know many of you have Doctors that will embrace the facts you provide them with.
Doctor Murphy is again writing to my GP a letter in the strongest way possible stating that there is no reason why he should refuse to prescribe medication for my RLS. He will also assure my GP that he will personally supervise any RLS medication that prescribed through my GP and indemnify him from any adverse outcomes. As Buprenorphine is no longer an option at the moment he has agreed to try me on Oxycodone which he says works well on several of his RLS patients. He said that old time GPs who did everything themselves would be willing to take educated risks, but the modern GP hides behind lack of knowledge. I’ll let you know how it goes.
Best wishes HipHop1972 ⛈️
Written by
HipHop1972
To view profiles and participate in discussions please or .
Dear HipHop, I’m so sorry to hear this. It’s beyond frustrating and unfair.
I’ve been waiting for an opportunity to post this letter I received my the head partner at my local practice (which also refused to prescribe Buprenorphine tablets following Dr Fackrell’s recommendation), and this seems to be a good time.
I wrote to them in the same way Dr Murphy has just written to your GP, pointing out that there seems to be a postcode lottery (see answer highlighted in yellow), but it seems their hands are tied, and unless a neurologist applies to have the local formulary changed, there’s nothing they can do. I’ve followed up on this letter by writing to Queen Square (under whose care I already am), asking them to respond, but have heard nothing back to date. I’m not hopeful.
I wonder whether Dr Murphy would have any influence over your local formulary? Even if he did, it’s likely to be a long process.
Or is there any way you can move to an out-of-area practice? This is what I, and others, have been forced to do. It’s a pain, but not impossible. I know I’m also not alone in having to ‘shop around’ pharmacies for the few that are able to source Buprenorphine. Again, they do exist.
Damn this situation! Something has got to change, and soon.
SueJohnson Kaarina Joolsg Do any of you know how to add documents (redacted)? I've tried saving as JPEGS and TIFFS but they won't upload.
Hi Claire_lc. Thank you for reply, I’ve been round all the other out of area doctors surgeries and they won’t accept me out of area. Trouble is they are all over subscribed and that will get worse with all the proposed new housing being implemented. Not a problem with our local Pharmacy they said they would get whatever I needed with a valid prescription. Anyway let’s see what happens
Would Dr Murphy not be able to provide an ongoing prescription on a green NHS script? Sorry, there’s probably a good reason why this isn’t possible, otherwise you and he would have already thought of it. Fingers crossed for you.
Hi Claire_Ic. I had to collect the medication directly from the outpatients Pharmacy. Doctor Murphy would write the green prescription and pass it on to the pharmacy, in actual fact he isn’t even allowed to have his own prescription pad and even though he is a Doctor and a consultant he has to ask for a single prescription sheet. He isn’t even allowed to take the prescription out of the hospital grounds, we were investigating how he could get the prescription to me so I could collect from my local pharmacy. The whole system is tied up tight, it’s so rediculous that when he goes cap in hand for the prescription sheet it’s to a non medical person so probably one of the numerous faceless beurocrats that the NHS is now riddled with 🤬
Yes Sue that’s the UK, NANNY state where we’re no longer trusted to act like grown ups and with responsibility. I’m afraid my childhood and spending ages 10 to 14 living in Africa and before that in UK would now come with a health warning. So grateful I lived then when kids learned to do their own risk assessments. I know the world is not as safe and child friendly as when I was growing up and worry about my Grandchildren every day and fortunately they only know this time and live with it and probably a lot more savvy than I was at their age.
not bureaucrats, the med college take the rights for certain drugs prescriptions from docs for a reason, do some reading , you'll understand, I know it is upsetting but there must have been a prescription abuse where people may have died. Opiates are powerful and dangerous, I'm not saying I'm not using but.... watch out
Good morning Niewiem. Thank you for your reply to ny post which appears to have upset you somewhat, it’s never my intention to upset anyone with my posts, only to highlight what so many of us in the UK have to go through to get treatment.
I've found Oxynorm to be the most effective for RLS.
I take 5mg in the early morning and it lasts till lunchtime. 6 to 7 hours.
I also take Oxycontin 10mg by 2, for the rest of the 24 hrs. But it isn't a patch on the Oxynorm. I am actually considering changing completely to the Norm over the 24 hrs, but need to get the pain consultant to agree that. I've been on a waiting list for over a year now.
Thanks Madlegs1 thanks for reply, that’s a rediculous length of time you have been waiting to see your consultant but mine is the same a 12 month wait, but I thank the z lord that I’m in a position to pay when needed and feel terrible for those who can’t.
Oh my word HipHop. I'm devastated for you.Oxycontin does work for many. It didn't for me, but perhaps if I'd taken 10mg every 6 hours, it may have worked.
If you try Oxycontin, it can cause rebound symptoms for some - increased RLS in the evenings and at night. Taking it every 4 to 6 hours seems to avoid this.
Alternatively, Dr Chris Murphy could write to the formulary where you live to ask them to list Buprenorphine as suitable for refractory RLS.
It's my nightmare. If they ever ban it in S. London- I'll have to move house to get the drug that keeps me alive.
Cruel and barbaric and it goes against the Hippocratic Oath.
Oh bless your cotton socks Joolssg, thanks for reply, he did talk about regular doses throughout the day so let’s see. I will do as you and Claire_Ii suggest and write to the local formulary, whatever they are 🤔. Well I’m now asking Santa for OxyContin without the effects you mentioned. I presume you can drink alcohol with it as I became alcohol free while taking Buprenorphine so I could always drink myself into a coma and wake up in 2025 after my 79th birthday and find it had all been a horrible nightmare 🤣
I drink on Buprenorphine AND Oxycontin. Alcohol is not a trigger for my RLS.Dr Chris Murphy would have to write to the formulary. They won't listen to us patients!
Hi Madlegs1, 🤣🤣 I like Guinness and Guinness Zero is the best alcohol free beer I’ve ever tasted so wasn’t an issue not drinking alcohol and no hangover, what’s not to like 🤣🤣
My laugh for the day although it is no laughing matter for you . "asking Santa" and "wake up in 2025 . . . and find it had all been a horrible nightmare"🤣🤣🤣
Thanks Sue, it’s hard to keep smiling when you just want to cry out, WHY ME but it’s not just me is it, it’s millions of others around the word who aren’t as lucky as me who has access to care no matter how fragmented it may be.. But I’m glad it amused you, I will endeavour to keep smiling 😊 and hopefully amuse you.
A PM will never get involved where a drug addiction and opiates are involved, and to be honest we are drugs addicts... you can say no, but we are can not live without them so an addiction it is.
You are entitled to that view.However, I prefer the term 'dependant'.
I'm very much aware I will be on either Buprenorphine or methadone for life to control a very serious disease.
I also have MS and have been on very strong MS immuno suppressant drugs since 2008. My MS neurologist would NEVER use the term 'addicted' for my chemotherapy/b cell depleting meds. But I depend on them to control my MS.
And an endocrinologist would never say a type 1 diabetic is 'addicted' to insulin.
The RLS experts do, however, make clear that dopamine agonists are 'addictive'. That's because RLS patients need higher and higher doses and get panicky and fidgety if there's a supply chain issue.
If you compare DAs to opioids for RLS-Dr Winkelman's study is showing that RLS patients stay on the same low dose for decades. Tolerance and addiction ( unless there's a history of abuse) do not happen. Compare that to PAIN where tolerance & addiction do happen.
So- we do not develop tolerance or become 'addicted' BUT of course we are Dependent.
Hello my dear Simkin. Thank you for your post it’s greatly appreciated. Let’s see what happens but I just have to continually remind myself that there are a great number of people who are in a much worse position than myself
GPs are unbelievable? right, they have tight hands with drugs prescriptions and I know so many GP;s they won't prescribe what we need, just won't for their own sake, what do they care? lose their license for you? hahah, they study an a....s off for 10y and go through all the rotations and exams, long hours low pays , debts in mils , (some commit suicide can't handle the pressure) and you come? nope,
I went it Dr Murphy and he recommended Buprenorphine but my GP wouldn’t prescribe the sub-lingual tablets as they are only allowed to prescribe them for drug and alcohol dependents!!!
So I went with the patches which worked for about a month. I get barely any relief from them now (10mcg) and I don’t know what to do. I had put all my faith in Buprenorphine and I’m gutted it doesn’t work for me 😢
I am considering going back on Oxynorm. I was previously on it but only 5mg twice a day…..again this didn’t touch my pain but Dr Murphy did suggest increasing this in his letter to my GP.
The whole system is infuriating 🤬🤬
I am moving to Spain next year and Dr Murphy said I should find their health system a lot more amenable.
I'd love to hear how you get on in Spain. If Buprenorphine is easily obtained, I'd consider moving there too. This country really is backwards when it comes to treating RLS.
Hi, I'm using buprenorphine VERY successfully but with 20mcg/hour patches. If I was on only 10, I too would be in despair. Can you try stronger patches. Like all meds, the optimum dose is different for everyone. Good luck with your struggles.
Hi restlessstoz. Thank you for your reply but I think you’ve missed some of my posts. Although the 10 microgram 7 day patch was wearing off before the 7 day they started to cause excessive inflammation and irritation of the skin so was proposing to change to Buprenorphine in table form. My GP refuses to prescribe it even though my consultant has written to him and now the hospital where my Consultant works is no longer going to stock it for outpatients so that is why I have to change the medication. I’m between a rock and a hard place and have been for some time now. But I live in hope
Hi HipHop, I was replying to Cookieburn24 in my reply. I'm sorry you've had troubles with the patches and not tolerating them. I find if they're on my arms I have no problems but anywhere else and I have awful itching and then dreadful redness. I do sympathise and hope you are able to find a solution.
I will try and get it increased but my GP is reluctant. He keeps moaning about dependence!!! Told him I’m happy to be dependent on it if it stops my RLS 😂
Can you take the studies that show that increasing to a dose that means your RLS symptoms are controlled doesn't mean that you'll be increasing all the time. I assume this is what he'd meaning when you say 'dependence'. Once you find that correct dose, you will stay on it for life and the study Joolsg is in has indicated. You won't need to go up in strength as you would if it was for non-neurological pain.
you don't understand , sorry, no offence, I'm ok with it too but my GP not, this dependence thing is something which will kill. You know Mikel Jackson? He had a doc willing to prescribe, where is he now, not the doc, the patient, that's what happens... we are addicts (maybe excluding you, no offence again) prove me otherwise. 1. as soon as you say I can not live with out this drug that is an addiction there right away...
sorry Cookiebum24 I made you upset, not intended, do I have an answer to our misery, no lady, I don't. All we have to do is stay together, share our experience and learn from others to avoid mistakes, cheers,N
ps. there is a small sugestion I found helping: I use cooling pad on my bed where the feet are and have evaporation cooling fan blowing gently, chilled air onto my legs, helps a lot.
Hello Cookiebun24. Thanks for your post, that’s very annoying isn’t it and an extreme action moving to Spain, 🤣 I really hope Doctor C Murphy is correct and you get better treatment over there. The system is in terminal decline in UK and I despair of it ever being put right.
Best wishes for your future health and life HipHop1972
hello HipHOP, so sorry to hear about your troubles as you were the forum member who gave me the link for Dr Chris Murphy at Manchester. In my part of UK, so far, does not seem to be a problem. I contacted my GP after seeing Dr Murphy, and on your advice had requested Bup, tabs as patches don't always last the week in your experoence. GP had to check it out but agreed thankfully that he could prescribe this for me. I was so relieved. Will post in a few weeks on how it’s going. So many hurdles for us to jump through, its almost beyond belief.
I hope you get your meds resolved soon. I would be okay taking the Oxycontin instead though as its profile is good for RLS too. Whatever helps us really and is straightforward to prescribe. I too read the Daily Mail article on RLS in pregnancy and how useful Codeine was, I had already worked this out myself as I weaned myself off Pramipexole as the Codeine is converted to Morphine in the body …..and it did take the edge of my symptoms. There is an over the counter version of Ibuprofen plus codeine where the dose of codeine is 12.8 mgs but best prescribed as 30 mgs via GP and is on Nice guidance for pain with RLS.
Good luck and thanks for your tips which helped me a lot.
Hello Riversong, you are very welcome, that’s what the forum is for and very gratifying when someone is helped through it. I don’t think my GP will change his mind about prescribing any Opioid medication, he is senior partner now and has dug his heels in so it will continue to be a 3 - 4 hour round trip to collect medication from Salford Royal Hospital, but hopefully I will only have to do that 4 times a year.
there is another otc meds with codeine at walmart, dunno if uk walmart got it but in canada for example, 300 mg acetaminophen, 15mg caffeine, 8mg codeine, so if I'm desperate need to take 2 or more and it works. but nothing works for more than 3 hrs flight duration, than I have to go strong, reach tramadol 100mg which my doc won't prescribe, hahha,
Hi Hiphop, I'm sorry to hear your situation 😔.If it's any consolation I'm on oxycodone 10mgs (longtec)and it works well for me on the whole. Still have the odd episode of rls/plmd but it's manageable. I have 10mg slow release and then a liquid for top up 2.5mgs if I need it. It did take a good 6 weeks to maximum benefit so be prepared to give it some time. I really hope it works for you and you can get some much needed relief.
Ah bless you Delilah, thank you for the reassurance but I hope it doesn’t take 6 weeks as not sure of the reaction to cold turkey from Withdrawal from Buprenorphine as it’s now unavailable to me
I agree that doctors put too much reliance on NICE guidelines, many taking them as rules and not having the courage of their own convictions and taking NICE guidelines as merely guides.
Gutted to read your update. I was put on Bup tabs under a neurologist, first privately then on his Nhs books. For 3 months I collected a green prescription from his secretary and just took it to Tesco pharmacy . It wasnt ideal but at least I had the tablets .Eventually after trying every practice in the town I wrote a pleading letter with help from Jules to the lead Gp of my new practice , he rang me and agreed to prescribe. It was the best day ever .It was such a battle but dont give up. Tabs are much cheaper than patches anyway. Keep us updated
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
UK RLS sufferers this is for you.
Dipyridamole didn't work for me
Looking for advice, yet again, please.
