Finally, after months of hitting my head against a brick wall with my GP practice, where Buprenorphine is firmly red-listed (and the partners flatly refuse to change their stance, even after being presented with all the research we know about on this site), I have been able to obtain an NHS prescription for low-dose Buprenorphine.
I saw that Jools has suggested that people should join a surgery in an area that will prescribe Buprenorphine, since the NHS allows you to join any surgery as long as they don't have their own restrictions on who can join.
So I took her advice and rang a surgery within commuting distance (about an hour away by public transport), where I knew the NHS drug formulary did not have Buprenorphine restricted. (You can check this easily on Google.) I told them that I didn't live in their catchment area but did work there (they didn’t ask for proof). I was told that they were happy to take on new patients like me, many of whom lived outside the area. I registered and said goodbye to my local surgery.
Next I had to find a consultant who would be open to prescribing opioids. I decided to take a risk on Dr Robin Fackrell at the Sulis Hospital in Bath. He charges £265 for an initial consultation, significantly less than Professor Matthew Walker (£360).
I found Dr Fackrell to be very receptive. He was up to date with the Mayo Algorithm and, after reading my notes from multiple well known sleep consultants, readily agreed to a month's trial of Buprenorphine.
He advised an iron infusion in the event the trial was unsuccessful, but mentioned that, in his experience, the effects of an infusion might last anything from a few weeks to several months.
Interestingly, his opinion was that Buprenorphine's reputation as a solution to refractory RLS was 'anecdotal' only, something that several people on this forum would surely dispute. The main thing was that he agreed to let me try it.
Three days later I had an appointment with my new surgery. The GP agreed to issue a prescription pending receipt of Dr Fackrell's letter. Unfortunately, as many of you know, there are severe shortages of Buprenorphine currently, and it’s taken me a couple of weeks to find a pharmacy that was able to source it.
I realise this solution is likely to be a lot easier in cities than rural areas. But personally I’d travel pretty much any distance to access a helpful surgery. I also appreciate that £275 plus travel to Bath is a lot of money, and not an option that’s available to everyone.
I just hope my experience might encourage others to leave unhelpful practices and seek out GPs who are more open minded. Sometimes there’s just no point in trying to fight plain ignorance and stubborn intransigence.
I'll post further updates once I've tried it! The experiment starts tonight…
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Claire_lc
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I’m sorry I didn’t respond to your last comment about this. I’ve honestly never felt that the Vortioxetine makes the RLS any worse (and I have tried a LOT of antidepressants). This one really seems to agree with me, and I haven’t noticed any change in my symptoms since taking it. That said, I haven’t cut it out altogether to see what happens. I was semi suicidal from sleep deprivation, and the Vortioxetine has helped beyond belief.
Maybe I should do as you suggest, but I just want to go straight for the hard stuff, especially as I feel I’ve tried every combination of Pregabalin, magnesium, iron supplements, you name it.
I’ve taken an antidepressant for about 7 years now. I tried coming off a couple of times and ended up not being able to function, I felt so hopeless and worn down by the lack of sleep. Venlafaxine gave me manic episodes, Sertraline definitely exacerbated the RLS, but Vortioxetine seems not to have any negative effect at all. I’ve been taking it for just over a year.
It’s nothing crazy exciting, except to me. First, clinical research has shown consistently, over the past two decades, that SSRIs up-regulate our receptors by “antagonizing” the D2 receptors. Antagonizing receptors makes them grow big and strong. Agonizing makes them shrink.
And more recently, studies show that SSRIs “agonize” the D1 receptors. Sounds terrible, right? Wrong!!! It is now believed that one of the worst things that DAs do to the RLS brain is to “antagonize/block” the D1 receptors and make these “excitatory” babies grow big and strong while shrinking our calming D2 receptors.
I’ve noticed that people who were on SSRIs the whole time they were on DAs have an easier time getting off the DAs. Makes sense if you think of the SSRI as being a counterweight to the DA. This is true even if SSRIs were started shortly after DAs. It’s seems to be less effective if the SSRIs were discontinued then the DAs continued for several more years. You fall into the second camp which means, to me, that your receptors should be damn close to baseline and that the only trouble is the SSRIs are making your legs go crazy.
There’s no way I would stop the antidepressants if I were you. I would switch to Wellbutrin. Then see what lesser RLS meds work for me.
That’s my mathematical/logic type equation. I see you didn’t do well with Targin. Not sure how much different Bup will be?
Lastly, Boofoo71 might be a good member to chat with. Better than me. She came off the DAs with the help of Tramadol and nightly iron AND stayed on the Sertraline much to my chagrin. This is four months ago and four days out from DA. Not bad!!!
“I still don't understand either. Ive been off my meds for 4 weeks now after 15 years of Dopamine Agnostic and I've never slept so well!!! I keep waiting for it to come back. Its not perfect but 90% better than the torture of augmentation and withdrawal. I'm glad you had a great night without any consequences”
If Boo would draw down on the SNRI and switch to a more friendly one I bet she would be at 100%.
For me it was melatonin. I took that often during the years I was on Pramipexole, and I’ve found it not too difficult to wean off the DA. Mind you, I did a slow taper over a 9 month period, and I used Tramadol whenever I needed to during that time . Also I ensured my Ferritin levels were above 300 before I began the taper, which personally I think helped a lot. Your observations are very interesting DesertOasis!
Yes, yes, exactly. If you’re taking a dopamine antagonist like melatonin or HRT or an SSRI during your dance with the DA devil then theoretically the withdrawal should be easier and your receptors in better shape. So what are you on these days and how is that going?
I’m on codeine. 120 mg before bed. It’s working really well. I plan to try and reduce that over time and one day perhaps be drug free. I’ve been off Pramipexole for 7 weeks now. I’m sleeping 8 hours a night and I can nap during the day if I want. I never could sleep during the day while I was on the DA. So that’s a nice change also!
Hi, was just doing some research and got a notification of your reply. So glad you’re off the Pregabalin. Not my first choice for post-Da recovery. Tramadol is my personal favorite these days - based on my research, and as I said before, consider it a gift from above. I truly believe it can save people from suffering AND simultaneously hasten their receptors return to baseline. In some cases, I think it can be used fairly long term, but I like the route you’ve taken - Tramadol to Codeine to “see how low I can go.”
Nine years on a DA and augmentation to sleeping 8 hours, plus naps, in a matter of 7 weeks, without the “living hell” so often spoke of, is quite the blessing. Alas, it’s up to the regulars on here to embrace this formula. I stick to what I’ve lived - sort of 😅. I haven’t lived the DA roller coaster. I lived the nightmare of taking a dopamine antagonist (melatonin) for a year and not making the connection. So I’m the self anointed bearer of bad news, as I’m sure you’ve seen me do. “Stop the frickin SSRI.” “Stop the frickin HRT.” “And try some iron at night God damn it.” Glad you listened to my ranting because it sounds like it provides you with some relief.
I posted a study about Vortioxetine several months ago. A small study, but it seems that this is one anti depressant that doesn't worsen RLS.
HRT didn't worsen my RLS and when I was collecting my recent Buprenorphine prescription from Superdrug, I asked the pharmacist to display some RLS leaflets. She said she used to have it frequently and badlt, until she started HRT. It went away on HRT.
Claire, I knew you were on HRT, even though I don’t think you stated so before. I assumed if it wasn’t the SSRI that drove you to a DA around menopause then it must be HRT.
HRT might be the best thing to happen to women’s dopamine receptors post menopause (women who don’t have RLS). Hormones keep our bodies, and especially our dopamine receptors, in tip top shape. As the hormones wane, we with RLS see a gradual and slight worsening of RLS. I have tried HRT on several occasions with worsening of RLS symptoms. So sad, because that’s what we with RLS really need. It’s just too fricken painful, and like I said, probably what drove you to the DAs. We just can’t duplicate Mother Nature’s pulsed nanoparticle release of hormones. Taking HRT is like a waterfall compared to Mother Nature’s droplets and will generally trigger worsened symptoms of RLS.
I (note the I), have no doubt your dopamine receptors are a thing of beauty compared to most of us on here who never suffered through years of combined SSRI and HRT.
Progesterone yes, but not the Oestrogen. I was on a combination HRT & it only played up for 1 or 3 evenings when I took the Progesterone pills..It was fine on the 3 week Oestrogen cycle.
It’s 9 or 10 days of progesterone I believe. One night of bad RLS a month is too much. There’s about a dozen women (and one man via testosterone) that were driven to DAs, or crazy, because of HRT - especially Birdland. We see this played out time and again on here. Claire never mentioned HRT, yet I felt certain that’s what drove her to the DA if the SSRIs didn’t. The SSRI was just the nail in the coffin. And yet not 😅. No pain, no gain. I’m willing to bet her RLS goes back to pre-menopause levels (maybe better) if the two are stopped and Wellbutrin substituted in.
Vortioxetine has been life-changing for me. Every single antidepressant I've tried triggers the TLS. But not Vortioxetine. It's stopped me feeling so desperate and hopeless when the sleepless nights really get to me. And zero side effects. I hope it works for you too Pippins.
Thanks Sue. It’s been a long and frustrating journey, but thanks to the help I’ve received on this forum, plus some dogged determination, I’ve finally made it. Just have to see if it works for me!
Thanks for posting. Fingers crossed the Buprenorphine works for you.Hopefully others who have been refused Buprenorphine by their surgery, but who have a neurologist/,Sleep specialist who recommends the drug, will use your example and register at a nearby GP surgery..As you say, a one hour journey is well worth the trouble!
Well done Claire. And thanks for posting your experience, including costs.
One thing I want to remark upon: effectiveness of buprenorphine for RLS IS anecdotical. Dr Fracknell probably meant that there have not been any ‘gold standard’ studies, i.e. double-blind, placebo-controlled ones. The use of bup is mentioned in the updated guidelines of 2021 in the Mayo Clinic Proceedings (several people use it effectively), as well as in one or two publications about the Opioid Registry organised by John Winkelman (21 out of 448 on bup) and one recent (2023) conference paper by Andy Berkowski reporting about a group of people that have been on bup for RLS. These latter ones are called longitudinal studies, and can be classified as anecdotical. That doesn’t mean that they are not scientific, they just don’t fit the db-pc gold standard.
HipHop, it might be worth it to reconsider Tramadol. It is virtually impossible for it to cause “augmentation” and it has been a blessing for many. I explain it here. Johannausuer has been using it successfully for 15 years. healthunlocked.com/rlsuk/po...
Thank you for this interesting and informative post. What do I put in to google to find out where the NHS drug formulary does not have Buprenorphine restricted? I've looked at the drug formulary site and can't find the information there. Many thanks in advance
I too have struggled to find anything on the NHS with regard to areas that can or cannot prescribe Buprenorphine. I saw Dr Fackrell many years ago (2017) on the NHS when he prescribed the Neupro patch which, as we all know now, was a first line treatment so it’s great to know that he is now so familiar with the advances. As I live between Bath and Salisbury my surgery (who cannot prescribe Buprenorphine) tend to refer to Southampton and I have an re-referral appointment in August when I am going to, once again, push for it. At my last visit it wasn’t completely ruled out but only after trying again everything that I had already, which I have done but still the surgery can’t prescribe. I’m thinking that if I’m not successful I will ask to be referred to Dr Fackrell at RUH or pay to see him at the Sulis. Can I ask is the surgery you have now joined anywhere near either Salisbury or Bath?
Hi Mulberry, from my understanding, Dr Fackrell can’t issue prescriptions for Buprenorphine privately (although that’s worth asking about as I’m not entirely sure). He wrote to my new GP advising it be prescribed on the NHS. I don’t live in your area so I’m not sure how easy it would be to find a surgery where Buprenorphine isn’t red listed. But you can Google the local NHS drug formularies to see if there may be one within driving distance that is open to it.
I moved from my local surgery in North London to one in South London, where the GP had no problem fulfilling Dr Fackrell’s advice.
If you can show you’ve tried everything else (as I did), then hopefully Southampton will be able to help.
Thanks Claire for your reply. I will hang on until I’ve seen Neurologist in Southampton in the hope that having tried everything suggested they will prescribe or maybe write to my GPs. I’m reluctant to change surgery as in every other way they are fantastic, but really feel Buprenorphine is my last hope of getting some control.
Good luck Mulberry. Just to say though, that I was very happy with my surgery, but the new one, despite being further away, is even better! I wasn’t expecting that. And I’m now three nights into taking Buprenorphine, and apart from one day feeling (and being) sick, I’ve had zero RLS and slept pretty much through the night. I hope you have the same success, but you really do have to push everyone and be super patient, and basically be like a dog with a bone. I feel sorry for people who for whatever reason aren’t able to make it happen like I did.
I absolutely identify with you! I have had such a battle trying to get Buprenorphine tablet's because I can't tolerate the patches which gave my skin blisters etc. Eventually I had to go through our Pain Clinic. People here and elsewhere know what I think of them! However, I have been on the tablet's for almost 2 weeks now and they have made me feel absolutely bombed ! I have been fiddling about with the dose because the Dr. told me to do that and am finding that ½ a tablet at 4 p.m. and a whole tablet at 10 p.m. seems to be helping and as Jools said, my body is beginning to get used to the tablet's, 0.4 mg . My Dr. is going to phone me on the 15th....he's not overly pleased that I am taking them and doesn't want to refer me to a Neurologist mainly because our Neurologist 's prescribe all the medication's which make RLS worse! Unfortunately, I am not well enough to travel or I would! Have done that before as I'm phobic about our Hospital! I really worry that the Chemist's won't be able to access Buprenorphine because I have gone through turkey once when a greedy Pharma Company decided to outprice an Opioid I had been on for year's and 1 day I had them, the next day...gone ! No warning! I really hope all will be better for you. This Forum is amazing so I know that you will get the help, advice and support that you need. You have everybody here rooting for you. I just wish the medical profession would listen to us and understand what hell we all go through! Please take care.
I’m interested to hear you’ve felt so bad on the tablets. I tried 0.4mg the first night, and was sick all day the following day. The next two nights (which is as far as I’ve got), I reduced the dose to 0.2mg, which I took later, around 10pm, together with 0.2ml cannabis oil. It seems to get me through the night without much of a knock on effect the next day (apart from feeling a little stoned!). More importantly, for the first time in years, I’ve had ZERO RLS.
It’s true it can be very hard to source supplies right now. I spent two days visiting and phoning pharmacies until I struck lucky. Every step of this process is a challenge, and it really shouldn’t be. The medical profession should be there to support, not thwart us.
Hi Claire . It's good to compare notes I find . I am managing to do a bit more now through the day but have,always had a sensitivity to medication. I have started to take 2.5 ml Oramorph at 1 p.m. because by then my spine fracture's are screaming at me! I didn't mind being occasionally bombed in my hippie youth but now I'm 71 ( how did that happen?!) with Osteoporosis, I can't really afford to teeter about! I don't know what I would have done without Jools, Sue and other's here who have helped and advised me because I couldn't stop crying and have been so desperate. Have learned so much from people here and am in the middle of emailing various politicians and medic's ! I wonder whether any of them will listen! My Dr.s and hospital haven't so far ! Why don't they compute that prolonged lack of sleep impacts drastically on human's, physically and emotionally?
Good luck Claire . Please let us know how you get on. All the best
Mad isn't it Sue ?! I'm amazed that you have the energy to support us all but so grateful! Why do people, including the medical profession, treat over 70's as though we know nothing also as though we are incapable of thinking or doing anything because we are still the same as we were ? ! I'm stuck at 28 !?! Is it our age or because we are women ?! Rhetorical question!!Thank you Sue. You made me smile! x
Thanks Biscuit! I’m only four days in, but I haven’t had even the minutest sign of RLS since I started. Two days of nausea, then back to normal. And only taking 0.2mg at bedtime. Early days still. I’ve had so many false starts - thinking I’ve found the solution, only to discover it’s not for whatever reason.
But given your experience and that of others on this forum though, I’m allowing myself to hope I might finally have my life back.
Can I ask how much you take, and have you had to increase your dose at all?
Dear Claire, I have been following this post. If things stay as they are, you have done very well. I was also on0.2mg buprenorphine and that did cover ky RLS completely. What a bliss! I didn’t experience any nausea. I built the bup up from 1/2 a tablet to a full one after several days or a week or so, maybe that helped.
The only backdraws for me were 1) mini-withdrawal in the morning, which my chemist solved after a year by suggesting a switch to a 5mcg/h, 7d patch, and 2) continued fatigue with brain fog. No resolve for the latter yet. I really hope you don’t get these two. Enjoy the calm nights and your well-deserved rest.
Hi Lotte, it’s so helpful to hear from people who’re a bit further down the line. Thank you! Did the side effects take a few days/weeks to kick in, or did you have them from the start? I’m definitely getting brain fog, but I’m attributing that to the medical cannabis oil (I’m stoned basically!!!), which I should be able to cut out after a couple of weeks. The patch was suggested by my consultant, but I’d heard that it didn’t cover the full 7 days and that some people experienced skin irritation, so the tablets seemed a better bet.
It all feels too good to be true, but even if I do develop some side effects, nothing could ever be as bad as the RLS. I don’t think so anyway.
I don’t know when the faigue/brain fog ‘started’ as I had that already from years of ineffective medication for the RLS (or not longer than some 2-3 weeks at a time) and thus years of poor sleep. I hoped the fatigue/ brain fog would slowly clear, once I noticed I virtually no longer experienced RLS symptoms and slept well. It didn’t. And I have been on buprenorphine for 3.5 years now. Remember: we are all different.
I would prefer the pills too, although the patch is convenient and in my case mostly does work the 7 days. Only occasionally I need to top up on the 7th night.
Hi ClaireYes I have had to increase Buprenorphine. I now take 4 x 200mcg daily. I get prescribed 5 a day but its rare I need 5. If I get breakthrough symptoms in the mornings then I take the first. Otherwise I take them from 4 pm onwards. I get approximately 6 hours sleep on a good night. I also take Pregabalin 25mg in the evening
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Wasting GP’s Time, so it seems
REFERRAL TO NEUROLOGIST
Met with neurologist out of Vanderbilt yesterday
Telehealth appt. made with Dr. Berkowitz finally
