I'd be really grateful for any thoughts on remaining treatment options before I start waging war with my GP practice to try Buprenorphine.
I took my last ropinirole tablet in May 2023 (after augmentation after 11 years), and have since been taking 300mg pregabalin (150mg at 8pm, 150mg at 10.30pm), together with 1mg clonazepam to help me get some much-needed sleep. I do think the pregabalin helps somewhat, but nowhere near enough. My max ropinirole dose was only ever 1.5mg - I'm now incredibly glad I was able to manage without going any higher. It still took two attempts to wean myself off.
Looking back at what's changed in the last 12 months, I realise there has been one significant improvement. I'm now free of RLS during the day, and can at least rest in the afternoon. But as soon as I get into bed, the symptoms spring into life, and my nights are the miserable affairs most of you know only too well. I'm still utterly wrecked during the day.
I tried Targinact back in January (thanks to everyone who helped during that time), but I couldn't tolerate the mini withdrawals. And while my sleep consultant has no problem prescribing oxycodone, he's not licensed to help with Buprenorphine. And I know I'll have an uphill struggle to obtain it because my GP practice has it red listed.
In the meantime I've started to wonder whether I've done everything possible to avoid the need for opioids. My main question is about my pregabalin dose, and whether a higher dose might be worth a shot. I have in the past gone up as high as 600mg daily, but according to my diary that was during the augmentation phase in late 2022, and I noticed no improvement or side effects either way.
Should I try a higher dose once more, a year after coming off DAs, in case it was able to reduce the severity of my symptoms (current IRLS score 34)? I suppose it's worth a try while I'm waiting to see a neurologist who might prescribe Buprenorphine.
I know my GP will not have a problem with a higher dose of pregabalin, so it would seem a sensible thing to try at this stage. (I realise I'm probably answering my own question!)
And does anyone else spend every waking hour trying to work out how to solve their RLS? I am consumed with finding a solution, especially when I read about some of the success stories, such as Joolsg etc. It's just so life-limiting, and so frustrating when treatment options that clearly work are denied to suffering people.
I've been drafting a letter to the partners at my GP practice, asking them to reconsider their prescribing policy for those patients for whom everything else has failed. I mention the postcode lottery and plan to attach every research paper coming out of the States. But I'd like to try a higher pregabalin dose beforehand. Is there an optimum dose (I believe it's 300mg), or do higher doses work for some people?
Thanks in advance for your help.
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Claire_1c
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The Mayo Algorithm says:"It is recommended to start treatment 1 to 2 hours before usual onset of symptoms. Treatment should commence at 75 mg of pregabalin daily (50 mg in patients older than 65 years) and be increased every few days as needed. Effective pregabalin doses are usually in the range of 150 to 450 mg per day."
I don't take it, so take your advice from Sue, Jools etc!
I just wanted to throw in my two cents that buprenorphine has been a cure for my multi decade battle with RLS. I recently went off to try to rule out some other side effects or issues I’m having and waking up again with RLS reminded me how miserable this is. I went back on it and the RLS disappeared once again.
The known side effects are manageable: occasional insomnia, daytime sleepiness. But I started having leg pain and I’m not sure if the med is the cause. I went off, and am going back on and so far so good. Either way, no RLS. Two days after I stopped taking it, it came back. So I’m trying to find a workaround to stay on it because I’d rather deal with the side effects and not have RLS than the other way around.
I'm just like you but on gabapentin and not pregabalin. I know I can't get buprenorphin here as even my neuro is not allowed to prescribe it. I tried preg once before and had a lit of side effects but the amount of gaba pills is ridiculous so I'm considering changing again to preg. It will have to be a higher dose than 400. Did you gave side effects at 600. I'm terrified of putting weight on as I'm already overweight
Hi Coeso, I'm in pretty much the same situation re buprenorphine, although I don't intend to go down without a fight!
Re. Pregabalin, you definitely don't need that many pills. I take two x 150mg pills, so in that sense it's easy. I don't think I've had any side effects at all since I started taking it, but now you mention it, weight gain might have been something I overlooked. Trouble is, the period I put on weight coincided with the lockdowns, when I was drinking every night and probably eating more because there was more time to eat in! So I'm not sure if it was the pregabalin or the lockdowns. That said, I've been on 300mg for three months now and haven't put on any weight at all, so on balance I'd say it didn't make any difference.
If your body reacts differently though, it's going to be a tough decision, although personally I'd accept pretty much any side effects if it stopped the RLS. Maybe you have to creep up your dose very slowly so that you take the minimum required to keep your symptoms at bay. I really hope it works for you.
hello Claire, I just wanted to say that buprenorphine is not the miracle cure for everyone. I currently take 0.8 buprenorphine in two doses plus 150 pregabalin. My rls is not controlled - I tend to sleep for 1.5 to 2 hours at a time - sometimes I might get 3 hours sleep in one stint but never more.
I too took on my doctors surgery to access the drug so was very disappointed when it didn’t really work. I would say that co-codamol with pregabalin was probably more effective so I would say try that. You have to be careful with the amounts though because all of those drugs suppress your breathing. I did try to lower the pregabalin and increase the buprenorphine however I felt sick, depressed and seemed to have issues swallowing.
Pregabalin also has its issues - I was in a higher dose with the co-codamol and that led to rapid weight gain and lack of balance - it’s really a case of pick your poison!
I think what I’m saying is proceed with caution and good luck - Dawn
Hi Dawn, thanks for sharing your experience. Are you in the UK? If your GP practice wouldn't prescribe the buprenorphine, how did you end up getting it? I'm booked to see a doctor in Bath later this month, who I'm hoping can help, but I'm not convinced he can.
Did your GP give you the co-codamol? I wonder if that's something that's worth trying before I embark on a fight for the buprenorphine. It's funny because I've convinced myself that only buprenorphine will solve my RLS, but your story makes me realise it's not a magic bullet for everyone.
Hi Claire - yes I’m in the uk - the GP was quite happy to prescribe a stronger co- codamol than you get over the counter. I think they are used to prescribing that.
I persuaded my gp eventually to prescribe the buprenorphine patches - first 5mg and then 10mg - they are allowed to prescribe those for pain- so if you say your rls is painful I think it ticks the boxes. Like other people have found the patches didn’t work for the full 7 days but looking back it wasn’t too bad. I then had seen Professor Walker privately and managed to get an nhs appointment with him ( it took over a year) and he prescribed the tablets. My doctor then gave in and prescribed every month however it is a but of a palava - I have to speak with him to get the prescription and then it needs to be ordered etc
I think a higher dose would probably curtail my restless legs but I can’t tolerate it. Other people find 0.4 - 0.8 mg is enough whilst some take up to 2 mg for it to work.
Anyway good luck - I’d say it’s worth trying the co-codamol - it might give you some relief for a while whilst you are trying to gain access to the buprenorphine. Dawn
Dawn thank you!!!! This is the most encouraging news I've had in ages. I had no idea you could book with Prof Walker privately. I've just sent a request so fingers crossed. I've been going round the houses wondering who to see and how on earth to get hold of at least a trial of buprenorphine given my GP has it red listed. Great advice to say the RLS is painful.
I know it's going to be a lifelong battle to obtain the prescriptions but I'm willing to have the necessary calls and basically do whatever it takes.
And thanks again for suggesting the co-codamol in the meantime.
By the way, did you transfer from private to NHS with Prof Walker because of the cost (he's expensive!)? Could you have carried on seeing him privately if you'd wanted/been able to?
Sorry for all the questions. You're the first person I've heard from that has found a way round the situation given your GP's reluctance. You've given me hope.
Hello, the problem people have with prof Walker is that after the first appointment they have issues getting hold of him privately but it might help you on your way since you will probably get an initial appointment.
He moved me to the nhs - my case seems to be particularly refractory - so I think that’s why. I think you just have to keep trying what you can - it is a horrible disease and sadly I’m still not in top of it. Good luck - keep us posted. Remember you have the co-codamol and bup patches to try as well.
Sorry if we've spoken about this already, but did prof Walker prescribe you Burprenorphine? Jools said he is now unwilling to prescribe because a few patients have developed dental decay. Jools hasn't had any issues and thinks he's overreacting. So I'd be really interested to hear about your experience with him and whether you GP agreed to take over prescribing.
Hello Claire - yes he prescribed it. He mentioned the tooth thing but didn’t seem that concerned and it has not been an issue for me. My GP then reluctantly prescribed it after getting the post appointment letter. Hope this helps. D
I'll let you know how he operates after my appointment on April 25th Sue. I thought he was able to prescribe, but I'm not sure pharmacies will fill the script, so you may be right and it has to go through a GP. And mine has opioids red listed.
Hi Claire, your post was interesting, as it is almost exactly where I'm at! I'm 64 and have had RLS most of my adult life if I include the times I had it during my 6 pregnancies, starting back in 1979. Back then I had no idea what it was. I also weaned off Ropinerole and Gabapentin last spring/summer 2023. That started the most miserable journey of completely restless nights. I too have been very happy that I have no daytime or evening symptoms. That has allowed me to have a few short car trips in which I wasn't in severe distress with RLS! on Saturday evening I attended an Easter Vigil mass that began at 8pm and lasted til 10, followed by an hour long party. No RLS, thanks be to God! But as soon as my head hits the pillow, BANG!! The RLS hits and keeps me awake most of the night. I'm now in a pattern of sleeping an hour, then up for an hour, with totals being between 1-4 hours.
I have been on pregabalin (Lyrica) since last spring. The highest dose I am prescribed to take is 300mg, but I've experimented with up to 450mg, and it makes no difference. I've been tempted to reduce pregabalin to nothing just to see if my good daytime relief from RLS is due to taking Lyrica, or if it is due to being off Ropinerole and Gabapentin after 25 years...I'm a bit afraid...
I will finally see a new neurologists in 3 weeks. I have sent her the Mayo Clinic
Algorithm thanks to Sue Johnson's/Joolsg advice, as well as a letter explaining my RLS "journey" (haha, "NIGHTMARE" is more like it!). I'm hoping she will be open to trying buprenorphine or one of the other opiates that RLS sufferers seem to get relief from.
Yes, my mind is on RLS during the day, as I'm usually tired and traumatized from the previous night of restlessness. It certainly weighs heavily on many areas of one's life other than nighttime! It even seems good in some weird way that my life is full of drama, mostly with 3 of my 6 adult kids who suffer from addictions and depression. I also stay busy with the 5 grandkids I know about (one little girl I found out about from a deputy serving papers on my son who didn't even live with us. She was 6 months old at the time, and in foster care!!) Life is FULL! Yet thoughts of RLS lurk and linger.....
I hope and pray that relief will be right around the corner for us and ALL of the dear people whose RLS stories have become so vivid to me in HealthUnlocked.
I very much hope the neurologist is up to date with all this and allows you to try low-dose opioids. We're definitely experiencing the same things at the same time. My ropinirole/pregabalin journey mirrors yours exactly, and I'm seeing a neurologist later this month! Weird but strangely comforting to know, even though we're on opposite sides of the world.
Unlike you I don't have so much to deal with in the rest of my life. You are utterly amazing to stay on top of everything and support your family in such an accepting and loving way. I'm in awe of your courage and perseverance. Doing all that while sleep deprived is nothing short of astonishing.
It will be interesting to compare notes once we've both seen our neurologists, and what happens next given how difficult it can be to get the prescriptions filled.
Thank you for your very kind reply, Claire! Im sorry for my late response. On weekends, my husband and I get busy with 2 grandchildren, and I end up not even checking my email. I agree it is comforting to get to know other people who are dealing with the same problem. I'm a bit on pins and needles for my appointment in a little over 2 weeks. I'm afraid she'll say something like, "Opioids?!? Heavens no! What's wrong with you?? You just need to increase pregabalin..." I've been on Lyrica now for close to a year, experimenting with higher doses, which doesn't help alleviate RLS symptoms, but makes me very drowsy and "spacey" (even more than my normal 64 year old baseline "spaceiness"!).
Hello Marzipana, I hope you’re well and coping with your full-on life! Did you have any luck with the neurologist? I’m eager to know whether you got a prescription for Buprenorphine or similar. I saw my consultant last month and he agreed to a month’s trial, which my GP has agreed to write a script for.
Unfortunately we have supply issues in the UK currently and it’s almost impossible to source. I’m hoping to have some success in the next few weeks, but am also anxious about the initial side effects and then whether it will be the magic bullet some people have found it to be.
Good morning (here!) Claire! I've been meaning to reply about my first meeting with my new Neurologist a week and a half ago, but May has been so busy. After waiting for the doctor for close to an hour for the first (8am) appointment of the day, I was getting perturbed, but she finally arrived and spent alot of time with me, and I definitely like her. She seemed open to my ideas (which I've mostly gleaned from Health Unlocked Forum). I was tempted to say, "Let's just cut to the chase and prescribe me Buprenorphine, please!" But I asked her opinion, and she suggested starting with Clonazepam to see if that helps, so I agreed. She sent the prescription to the pharmacy, but it wasn't filled for several days, so I only started last week. It is a .25 sublingual tablet, which hadn't shown to make any difference in my RLS, so I messaged the doctor and she replied, telling me to try 2 tablets. I did that last night and was still up during the night, loading the dishwasher, then unloading it 2 hours later, puttering around in the kitchen, and putting away craft supplies that my granddaughter used over the weekend, back into the basement. I finally crashed on the sofa from 4:30 am 'til 7am, but my total sleep time was 4 hours, broken up. I will let the doctor know Clonazepam is not doing its job!!
I too am afraid of the side effects of Buprenorphine that we've heard of on this forum. It seems like it's been the Golden Ticket to the Train Ride of Peaceful Sleep for some folks, and just another drug with nasty side effects for others! Kind of like when my 6 year old Grandson poses the brilliant philosophical question, "Grandma, if you had to choose between eating a bowl of live worms or raw liver with peanut butter, which would you choose?!?" Indeed, which WOULD I CHOOSE?
I hope your script has been filled by now, Claire, and that you're getting some awesome sleep without any side effects!
OMG I am literally laughing out loud at this. And I really need a laugh right now, so that’s your good deed of the day ticked off!
I think your grandson is spot on with his question. Both options are totally miserable. Unless maybe they aren’t and the raw liver with peanut butter (Buprenorphine) might actually be nicer than it sounds. Jools and Shumbah have certainly had their lives transformed by it.
So clonazepam…I have some thoughts about this, having taken it on and off (mostly off) for several years. Mostly off because every doctor I’ve seen has made it seem like a double dose of live worms! But in January this year, I was desperate enough to give in and start a regular 1mg dose. In my experience it has no impact, good nor bad, on the RLS, but it does give you a little more sleep. What I find is that I now manage 1-3 hours before the RLS wakes me up, though only really from around 3/4am. Even 1mg clonazepam doesn’t stop the RLS from 10pm - 3am. That seems to be the time it comes out to play in earnest, and nothing I’ve yet tried (apart from those distant ropinirole days) stops it during that period.
It also takes me ages to wake up. I feel very drugged (in a not unpleasant way) until about 10am, which kind of wipes out another bit of the day. But it gives me some slightly deeper sleep from maybe 4am to 8am, which has been life-changing.
Still, that leaves me on a cocktail of clonazepam, pregabalin and an antidepressant which I wouldn’t need if I could get some bloody sleep! I’d rather swap those three for Buprenorphine. Or would I? I just don’t know, and I suppose neither of us can know until we’ve tried it, because it seems that everyone reacts differently.
One thing to note is that you have to taper off clonazepam REALLY slowly. There’s a schedule called The Ashton Manual that shows exactly how to reduce your dose. It can take a very long time, but I’ve come to terms with that and feel confident I can do that if only the RLS was under control.
Anyway, I saw my new neurologist a few weeks ago and I’m afraid I went straight for the jugular and asked for Buprenorphine! No beating about the bush, just give me the drugs. He had all the letters from my previous consultants so didn’t need much persuading, although he did want me to consider an iron infusion if it doesn’t work. He’s prescribed 0.4mg initially, increasing to 0.8mg if needed.
Currently Buprenorphine seems to be in short supply worldwide, so I haven’t yet sourced any. Hopefully next week. But then I hear how freaked out everyone is at the thought of not being able to get their scripts filled and I’m glad I’m not yet on it.
It’s all so confusing. Yesterday I was so sleep deprived I wanted to end it. Today I feel a little better and more optimistic. And so it goes...
Just to say, a few weeks on a low dose of clonazepam won’t make you into an addict. I’ve done that and stopped cold turkey many times, without anything horrible happening. I think you’d need to take it for a few months at a higher dose, like me! So maybe give it a go and see if it helps you. I hope it does.
Keep me posted! I wish I had a grandchild to keep my spirits up. My sons are still in their early 20s and no sign of wanting kids yet. Sob!
Claire x
I would have thought that with 1mg clonazepam and 300mg pregabalin, you'd be RLS free and sleeping like a baby. But clearly not the case for you!It is possible to increase the pregabalin but are you experiencing any adverse effects from it at present? Side effects tend to increase as you increase the dose, so if they're troubling you now, that might be a problem. (I see you took 600mg previously without any problems but you didn't mention for how long).
Are you taking any other meds, OTC or prescription that may be triggering your RLS?
Have you kept a food diary to see if that results in any triggers? I never used to think I had food triggers. I now know for sure that I do. Even my young son (who has RLS) said to me the other night that some chicken curry gives him twitchy legs but not others. Turns out the one I make is problematic, the one his dad makes isn't.
I've experimented with pregabalin doses and 300mg seems to be optimum, even though it only takes the edge of the RLS. The clonazepam really helps, but even 1mg only gives me 1-2 hours between similar periods of walking round the house.
I'm not taking anything else medically that could be triggering, but food is definitely something to watch. Sugar, alcohol, salt, chilli - all of those have had to go. At least after about 3pm. So I'm with your son on the chicken curry trigger! It's like constantly trying to solve an unsolvable puzzle!
Hi Claire, I've been out of touch for awhile, which is honestly due to my ineptness regarding anything online/digital/technical. I'm never sure how to get back into a "thread"/conversation with a particular person on this forum.Since we last communicated, I've been on Clonazepam, then Trazadone, neither of which made any difference. I've stopped both of those. I have been wearing a "Fitbit-like" wristband for a few weeks that my Nuerologist ordered. It is supposed to track my sleep and wakefulness, but I also have to track on a graph my "perceived" sleep and wakefulness. The two should be in synch. I almost feel as if my doctor doesn't believe how little I sleep I get. I turn everything into the sleep clinic on June 4th. What a pain in the neck!!
I also broke my left wrist on Saturday, running around with my Grandson. I had surgery on Tuesday to put in a steele plate. They gave me a nerve block, so I still have no feeling in my arm/hand....such a creepy feeling! Walking around with RLS in the middle of the night was made more complicated with a cast on my arm and sling around my neck (which is causing another pain in the neck : )
Have you been able to get on Buprenorphine yet? Has anything changed? I feel terrible for most of the people on this forum who are experiencing so much misery with their RLS. I hope you're experiencing some relief!
Hi Marzipana, your message has been patiently waiting in my inbox for six whole months! How are you, and has your wrist healed now? I hope so. More importantly, have you had any success getting your doctor to prescribe Buprenorphine? Again, I really hope so.
After many months of fighting and a little bit of bending the rules, I was able to get hold of a regular prescription and now take 0.4mg Buprenorphine daily. My RLS disappeared overnight - literally zero symptoms. I so hope you are in a state that allows it. It’s life changing. X
Hi Claire, I'm so glad to hear you're doing so well on the Buprenorphine! Life changing indeed!I did finally get a prescription for it in July, after doctor first made me take Clonazepam, Tramadol, Hydrocodone, and doing a stupid sleep study, which I learned months later was invalid because the wrist device was so poor they didn't get any info from it. That was good practice in my lifelong quest to keep my big mouth shut in an attempt to learn humility.
After several false starts with getting the prescription filled at local pharmacies (they said the prescription was too small of a dose for them to carry), I finally got it at Costco. The prescription was 0.7mg/0.18mg, (the latter being naloxone, so I wouldn't O.D. on it; )
I took the sublingual dose that night and slept all night, but awoke to nausea and dizziness that soon became continual vomiting. Finally by late afternoon, my husband took me to ER/urgent care. The 15 minute drive was horrible, yet I still felt a bit smug that I had saved vomit bags from back when I was a school bus driver, 7 years ago. You just never know....
It took from 5pm til almost 11pm to finally see a doctor, who I swear looked just like Doogie Hauser, M.D., (an American sitcom in which the doctor was a teenager). I got IVs for fluids and nausea, and finally got released in the wee hours if the next day. Just this week I got a bill for charges not covered by insurance, the ER bill being $928 for ER and $450 for labs.
I will see a new neurologist at Mayo (I am now on Medicare and switched back) on Tuesday. My first choice Neurologist was not taking new patients, so I hope the guy I'll see is good. I will consider taking Buprenorphine again, as I think they gave me way too high of a dose in July (you take .4mg, right? ) Still, after my bad experience, I'm downright scared!! But having had no drugs since July, and sleeping from 0-4 hours per night is not a great option either. I'm hanging in there as a "NightWalker", but it's discouaging.
I'll stay in touch after I have my appointment next Tuesday!
Your messages always make me laugh. Even when you're struggling with horrible challenges, you always find a way to see the funny side. You're a big inspiration to me.
0.7mg is a huge dose to take first time. I found that, initially, even 0.2mg was enough, although that's gone up to 0.4mg since May this year, and I think the dose is now stable.
Have you tried cutting the 0.7mg pills? A cheap pill cutter would do the trick. Can you cut one into three and try that?
Even on 0.2mg I was sick for several days. I know Joolsg had the same experience and discovered that medical cannabis oil helped. But the nausea does seem to go after a few days as your body adjusts. It must have been pretty severe on a starting dose of 0.7mg.
Let us know how you get on at your next appointment. ❤️🩹
From memory, nothing much. I remember I had medical cannabis oil, as suggested by Jools, but the sickness I experienced was nothing compared to what Targinact/oxycodone caused. I thought I was going to die with that - had to stop after 10 days.
But with Buprenorphine it was more just having a bowl nearby as I kept throwing up. Lasted for maybe three days then calmed down. Totally dealable with, but that's just my personal experience. I know others have described extreme nausea, which is awful. But worth it for the total relief Buprenorphine gives.
Are you about to start? Or are you already taking it?
Yep I had extreme nausea and vomiting on 0.8mg Buprenorphine. I was bedridden for a week BUT determined to carry on as I had ZERO symptoms for the first time in over a decade. I then started cannabis & it stopped the nausea in 2 nights. I then stopped cannabis after 10 days & my body had adjusted. No more nausea.So, if you start again, cut the tablet in half so you take 0.35mg and have zofran or medical cannabis with 20% THC to stop the nausea.
Good luck.
And bloomin heck. No wonder people go bankrupt in the USA. $1400 for a visit to ER.
I do have Zophran tablets from a prescription they gave me at the hospital...too bad I couldn't score the weed as well! The $1400 was just my part that Insurance didn't cover. Doogie Hauser made a lot of $ off that bad experience!!!
Marzipana Can you get a lower dose of buprenorphine and then quarter the tablets? Starting off with a tiny amount might help your system get used to it.
I still have the supply from July, minus the one I took. The only problem is that it says not to cut or crush the tablets...maybe that's just one of those warnings that's a bit like "Don't remove the tag from the pillow you bought." (I was about 18 when I realized I wouldn't get arrested if I cut it off AFTER I bought the pillow.) Since it's less than a week that I'll see the new doctor, I'll probably just wait and ask him. The 30 sublingual tablets were $80!! I don't want to waste them!
Strangely, some tablets are really not meant to be cut because it interferes with how rapidly they are absorbed, but others, especially when they're not scored, are able to be cut.
And in some instances, especially with film/sublingual tablets, one is advised to not cut them because the remainder of the film/tablet degrades.
I always check with my local pharmacy as the pharmacists always seem more knowledgeable than my doctors in this regard.
I regularly cut my 0.4mg pills as I occasionally need an extra 0.1mg. I know Joolsg cuts hers too. The basic sublingual tablets don't seem to have a problem with being cut. I think it's slow release tablets that you have to be careful with amrob123 .
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Medication help
Treatment of RLS with Pramipexole 
Pregabalin no longer effective
