My name is Jane and I've suffered from acute RLS for about 4 years now. I was prescribed an evening dose of 2.5 mg Ropinerole by a neurologist here in the UK, with a suggestion to go up to 4 mg if I feel I need to. I would love to find a way to heal this issue - going out to the theatre, having friends over and other things that occur after 8 pm in the evening are just so impossible, because either the RLS becomes such a massive distraction or the Ropinerole completely knocks me out to the point where I can barely keep my eyes open.
I have, on the odd occasion, run out of this medicine over a weekend and have been completely shocked at my body's response: endless jerking of not just my legs, but my back, shoulders and arms resulting in a total inability to sleep. I completely understand why some people take their own lives when suffering from this syndrome, and am reasonably confident that I would be one of those people, without the medication. My life depends on Ropinerole. This sounds a bit dramatic, but I know that it is true.
I look forward to find support and offering support on this forum, and hope that at some point, the medical establishment learns more about this disease so that more help is available for those who suffer from it.
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Chocolate123Lab
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Welcome to the forum. You will find lots of help, support and understanding here.
Ropinirole is no longer the first line treatment for restless legs. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation.
I strongly advise you to come off it before you suffer from augmentation as it will be a lot easier.
To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks.
After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. And it will help your withdrawal from ropinirole. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Thank you so much Sue! I will make an appointment with my neurologist here in the UK to see about getting of Ropinirole. Seems like it's better to leave this medication off of my treatment plan. I've had iron levels checked and all seems normal, but no harm in getting that done again. Thanks so much for your help! Jane
Ask what your ferritin is. What is normal for others is not normal for those of us with RLS. It may not even been tested since normal iron tests do not test for ferritin.
Most people join this forum when they are experiencing drug induced worsening of RLS on Ropinirole or Pramipexole.
It's inevitable. The top experts believe EVERY person taking these drugs will experience more severe RLS in time.
Most of us have been in your position and have managed to get off Ropinirole and are in a much better place.
UK doctors know zero about RLS or dopamine agonists or augmentation.
Presumably, when you first took Ropinirole it was miraculous?
Basics:
1. Get full iron panel, morning, fasting blood tests and raise serum ferritin above 100ųg, preferably 200ųg/L by iron pills EVERY other night or an iv iron infusion.
2. Review and safely replace ALL trigger medications ( anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds).
3. If 1 & 2 don't work, start pregabalin or gabapentin ( see RLS-UK website for doses and timing).
4. If 3 doesn't work after 2 months, start a low dose, long half life opioid.
However, when you are taking Ropinirole, the first thing you have to do is report the worsening RLS via Yellow Card Scheme (doctors will keep prescribing these dangerous drugs unless we all report augmentation) then see your GP to ask for help reducing Ropinirole. It can be hellish, with little to no sleep for the 2 weeks after the last dose. But it's worth it as you get your life back with the right treatment.
Reduce by 0.25mg normal release Ropinirole every 2 weeks. Ask for 30mg codeine, 50mg tramadol or 10mg oxycodone to help settle the severe RLS at each dose reduction.
Start pregabalin or gabapentin about 4 weeks before the last dose of Ropinirole.
Read RLSUK website, especially the sections on augmentation.
Have you experienced Impulse Control Disorder? Did your GP warn you about it?
Many of us have been in your position and are now RLS free on the correct medication.
Thanks so much Joolsg! I really appreciate your feedback. Have made note of everything mentioned, and will pursue getting off Ropinirole. Even the thought of it makes me anxious, but best to get on top of this before the drug completely stops working. Many thanks! Jane
I was in denial for at least 3 years. But severe RLS, starting earlier and earlier becomes intolerable. These drugs cause D1 dopamine receptors to become hyper excited and they scream out for their hit. That causes the severe RLS. It starts earlier and soon you can't sit still. Then it moves to arms, hands, back and face.I now score 0/40 on the IRLSS. I take 0.4mg Buprenorphine and my life has been transformed.
Sadly many people develop ICD and have lost homes, marriages, jobs on these drugs.
I'll look into the Buprenorphine! Thank you! And, in answer to your previous question, I first sought help in 2021 and then again in 2022 from 2 different neurologist at The Whittington Hospital here in London. They were quite happy to prescribe Ropinirole and to direct me to take the maximum does, should I find I need it.
And no...no mention of ICD or anything else for that matter! The first of I heard of that was on this forum.
Quick question: Do you reckon I have to go to a private neurologist for proper, informed care? I note they are quite pricey.... Or could I work with the crap one's I've already been refereed to, and show them info from the RLS website?
You could try to educate the existing neurologists.No neurologist should be prescribing dopamine agonists to a newly diagnosed patient! The NHS and NICE guidance are both around 10 years out of date, but any neurologist worth his salt should keep up to date in knowledge, training and research. The Mayo Clinic Algorithm for treatment of RLS was published in 2021.
If the neurologist didn't arrange full iron panel blood tests, that is negligence, because even the outdated NHS and NICE guidance make it clear that serum ferritin has to be above 75ųg/L and if not, iron treatment should be started. The guidance also states doctors should review existing medication.
RLS-UK supported a campaign in 2020 to get RLS on the medical curriculum. The RCGPs said all doctors would know how to research and treat RLS.
The fact you weren't assessed for iron etc and weren't warned about the VERY high rates of drug-induced worsening and ICD is not surprising. It confirms why we have absolutely no faith in doctors.
You should definitely file a side effect report via the Yellow Card Scheme and tick the box that notifies your doctors. Also write to the neurologist who prescribed Ropinirole to express your concern that you weren't warned about augmentation and ICD. Point out that there have been hundreds of cases against doctors for failure to warn about ICD ( where the patient has lost money etc).
There are only around 3 or 4 doctors in the UK who are knowledgeable about RLS.
Dr Jose Thomas at Gwent Sleep Clinic, Professor Matthew Walker at Queen Sq, UCL in London and Dr Robin Fackrell in Bath.
However, only Dr Thomas has made it clear he stopped prescribing dopamine agonists about 8 years ago.
If ANY doctor suggests switching to another dopamine agonist, saying there's lower risk of augmentation, RUN a mile!
Sadly, we have to educate ourselves, as the UK doesn't even teach the basics.
You could also send a complaint to the Association of British Neurologists.
As you're in North London, Buprenorphine is very likely to be 'red listed' which means your GP can't prescribe it. So arrange a GP appointment to discuss blood tests as per NICE guidance and ask if Buprenorphine is red listed, and if so, how you can get it prescribed by a private neurologist and how they can continue the prescription. Buprenorphine is for refractory RLS, when iron infusions and pregabalin or gabapentin have failed.
Unfortunately the key word is "knowledgeable" and as we have learned not only in the UK but in the US and many other countries they are few and far between. My internist is rated as one of the best doctors in my metropolitan area as rated by other doctors and he prescribed ropinirole.
Hi Chocolate, I’m not sure how long you have had severe RLS, but I am fairly certain it got worse when you began HRT. No one who is predisposed to RLS can be on HRT. The good news is, it only worsens the symptoms of RLS, it does not worsen the disease itself - which is small and few dopamine D2 receptors, as compared to the non-RLS world, as well as much less stored “brain” iron. You must taper off the HRT before the DA. The DA does (!!!) make the disease itself worse, though it’s good at alleviating symptoms of RLS - at first. DAs make our lousy transport system even more lousy, as time goes on. HRT actually improves our dopamine receptors, it’s just too painful in the process. And once you stop the dopamine ANTAGONIST (meaning the HRT) for long enough, the receptors crawl back to lousy baseline. On the bright side, once you stop the dopamine AGONIST, your receptors crawl back to baseline as well. And your baseline might not be bad at all. So even though the HRT may have caused you to go on the DA in the first place, it was also likely a counterweight to the DA - making it less effective in terms of relief, but also less effective in terms of down-regulating your receptors. That’s a good thing.
I completely control my RLS with 50mg of ferrous bisglycinate taken on an empty stomach about two hours before bed - every night, NOT every other night. My “ferritin” or “stored iron” is quite healthy. What I’m doing is replacing the “serum iron” that plummets every night, in all humans, and brings about our symptoms of RLS. Serum iron is the grease and glue that keeps humans’ dopamine receptors chugging along. We rely VERY heavily on serum iron since our brains are always so low on brain ferritin. Most of us are fine by day when serum iron is plentiful and our brains can suck it up, but when it plummets at night we suffer. The non-RLS world can turn to their healthy brain iron stores to keep their dopamine receptors chugging along. Plus they have bigger better dopamine receptors than us, to begin with.
The vast majority of the world can take substances like HRT, SSRIs, tricyclics, calcium channel blockers, melatonin and PPIs…we can’t…too painful. These drugs are antagonistic towards the release of dopamine which provokes symptoms. Sadly, antagonizing our dopamine receptors, as I mentioned before, is probably what we need to do - just the opposite of the dopamine agonists that down-regulate our receptors.
I would also try taking your levothyroxin in the morning before breakfast rather than evening if you are doing that. Also, try not to eat much past 7pm. That helps a lot of people on here. Sleeping in the prone position helps a bit also. Listen to Sue and Jools’ advice about tapering down on the DA. I wish I had a dollar (inflation, so no longer a nickel) for every time someone came on here that was prescribed a DA due to a drug turning their RLS into the devil incarnate. I would be quite wealthy. The key is to have an opiate like oxycodone or tramadol in the wings, should you need it while drawing down. First HRT, then the DA. You can do this!
Thank you for your feedback on this. This is not great news about HRT!
I think you are absolutely correct in drawing that conclusion. I think the symptoms of menopause were also something that kept me awake at night (hot flashes), and from what I've learned about estrogen, it seems quite important to replenish our stores of it as we age, to protect our bones, and all other systems of the body which need it to function properly.
I had consulted with the Newson clinic here in the UK about menopause treatments, and interestingly, they didn't mention anything about HRT and my RLS. Not good! Am gonna send them a message and see why on earth not? If they are experts in the field (and expensive ones at that), then this is a connection they should be well aware of, especially as so many menopausal women have RLS!
Same goes for the Neurologists that I saw at The Whittington Hospital here in London. No mention of HRT causing issues, despite the fact they were both well aware of the fact I'm on it. Shameful!
Thanks for the note on Levothyroxine. I already take it in the morning, as prescribed. Good to know I'm getting at least one thing right! And the iron as well. I have taken it at night, but found it to be of little use...perhaps because the HRT was getting in the way.
How do you deal with the symptoms of menopause, out of curiosity?
I guess menopause was one area that didn’t cause much trouble. I’m very interested to see how you progress. I think you will have an easier time than most coming off the DAs!
As your Neurologist was telling you to increase up to 4mg of Ropinerole he isnt knowledgeable so it you would like to tell us which part of the UK you're in someone may be able to recommend a better Neurologist for you Pipps
Let me add my welcome to this most helpful forum of fellow RLS sufferers.
I have read and agree with the many useful replies you have had and therefore I will not dwell on the technical issues but simply relate to you a summary of my story in the hope it helps you feel support is out there.
I was prescribed DAs and after augmenting was helped by several fellow contributors such as Joolsg and Sue J. The pregabalin & gabapentin drugs did not work for me and I have had to slowly come off them. I now use a low dose (0.4mg per day) of buprenorphine which gives me relief from RLS but serious side effects mainly nausea. i am working with my GP to hopefully resolve this.
My message to you is therefore please do not despair there is relief available but it takes time to find the solution that suits you. You will find, as the replies to your post prove, that you will be guiding your GP. I am fortunate that my GP accepts that he needs to know more about RLS and DAs etc.
Please keep posting your progress and you will gain support from many of your fellow sufferers.
Thank you Davchar! I really appreciate you taking the time to offer your thoughts. It seems to be quite the journey for most, and I'm really grateful that everyone here is so generous with their stories, support and advice. Invaluable!
Not a problem and please don't be afraid to post about how things develop. It helps to get it out there rather than bottle it up!
One danger I found was that you get lots of ideas and want to try different things and it can get in a muddle as I found out. i was to impatient about making changes and things got "overlapped" etc I did find moderate exercise such as gentle swimming helped to prevent the early in the day set in of symptoms and i am hoping that if my receptors recover then i may just be able to control the RLs with this. However it is now 7/8 months since my last DA and without buprenorphine the RLS is soon back with me
Welcome to the community. I would like to second some of Devchar's comments. Probably the most important next step for you is finding a neurologist who is informed about RLS or is at least willing to learn. Fortunately, that has been my experience. Almost simultaneously, I found this site(a lifesaver) and a neurologist who would work to help me find relief from the augmentation I had been experiencing for 5 years. Of course, at the time, I did not know I was augmenting and my neurologist just prescribed another dopamine agonist. Predictably, soon I only got worse. But then with the help of a different neurologist I started on Buprenorphine. This happened only a few months ago and my world has completely turned around. Most nights I am sleeping well and not suffering with any side effects I can't deal with. However, as you will discover reading post on this site, RLS sufferers respond to medications differently. What has worked for me and others may not work for you. It may take time, but you will find your way. Fortunately, you have been taking a dopamine agonist for only 4 years. Many members of this community had been taking them for 10, 20, 30 years or more. Hopefully, your receptors will repair themselves quickly and you will not need a low dose opioid like Buprenorphine like me. Perhaps Gabapentin or Pregabalin will work for you.
Good luck and try not to despair. Like many here, I have been way down there as well. But you will find your way to a better place. Rivers
I feel for you on the HRT issue. Before I started HRT my RLS was mild and occasional. At the time I knew nothing about triggers. So instead of stopping HRT I began my journey with ropinirole. Very bad decision. Sixteen years later and up to 8mg of ropinirole a night, I got educated on augmentation and triggers. I have been ropinirole free for three years now. My RLS never went back to mild and occasional. I remain unhappy about not being able to take HRT, but I know the consequences, so I stay clear of it as well as so many other triggers. Good luck with your ropinirole withdrawal. Luckily you have not been on it for long and are on a relatively small dose.
Hello Birdland, thanks so much for sharing your experience with me. Wow. 8 mg of Ropinirole is a LOT! I'm so sorry the powers that be didn't know better at that time. I'm glad you're off roninirole now and have made some good progress, despite not being able to take HRT & I hope you've found some natural approaches to keep healthy and well post menopause.
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Help me I have an extreme case of RLS
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Ropinirole and Pregablin
