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_lc
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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"!).
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!
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