I have quite severe RLS - the relentless symptoms are kept under control to some degree by 0.75mg of ropinirole and I am certainly not willing to up the dosage. I get the occasional breakthrough of horrendous restlessness - often in the car! Aghh - so I think that the dose I am taking is no longer quite enough.
I have been to see my doctor and discussed the use of opioids with him and he is not totally against considering prescribing them and he told to see if I can find out how others in the UK have managed to get a prescription. He appears to feel that his hands are tied in relation to prescribing them. I am the only patient on his sizeable list who has this condition to this degree so he has not had experience of dealing with it.
Also, is it the case that consultants can't prescribe them?
I have tried Pregabalin without success. I get very down about it, and now peripheral neuropathy has joined the party :(.
Thank you in advance for any advice you are able to give me.
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I can't help you about obtaining opioids but I am sure others will be along to help you with that.
Can you tell me about your experience with pregabalin. How long did you take it? At what dose? Did you have side effects you couldn't live with? If not and you were taking it at the same time as ropinirole it doesn't help much while you are on ropinirole.
Since you are still having symptoms on ropinirole, it sounds like you are augmenting. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you need to come off it.
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. 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 assuming you can get one. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. 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)."
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...
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
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.
Candesartan is known to make RLS worse for many. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Dear Sue, Thank you for this detailed reply and apologies for the delay in responding. I have had a family crisis recently and that is taking up much of my time and attention. Pregabalin did not help my restless legs and it made me feel bad whilst taking it. I was then given ropinirole by a consultant and it had an immediate impact, stopping all symtoms as soon as I took the first dose. I never took it at the same time as pregabalin. It has since stopped being so effective and I had to up the dose from 0.5 to 0.75 - I am currently taking that. I would rather not be on it but the knowledge of what I will have to go through to come off it with no chance of being given an opioid alternative is too depressing. It really did make me very depressed before I got any treatment for it. The doctor told me that my ferritin is over 150 when I saw her last week. I do take candesartan but I can't remember when I was changed to them so that is worth taking into account and discussing with my doctor. I have read that it doesn't affect some people but I may be one of the ones that it does affect! I was taken off amlodipine due to it making my blood pressure too low but that didn't help the rls. Many thanks once more for the response and apologies for the delay at my end.
If you don't get off the ropinirole, it will only get worse. Others have given you information on getting opioids. Also if you say where you live I may be able to give you the name of a doctor who will prescribe opioids. If not, just because pregabalin made you feel bad doesn't mean gabapentin will.
And there is also dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Getting a prescription for a low dose opioid for RLS can still be difficult in the UK: some doctors will prescribe, in some cases it needs a neurologist...You may already have read the following and shown it to your doctor:
Hi Faith,I answered your query about Buprenorphine 2 months ago.
First, your GP has to find out if Buprenorphine is red listed in your prescribing area. If so, he can't prescribe it. You would have to see a neurologist or sleep clinic specialist who can prescribe it.
I included the link to the Buprenorphine study by Dr Berkowski and the Mayo Clinic Algorithm, which show the average effective dose.
You can tell your GP that in S. London, GPs can prescribe Buprenorphine 'off licence' for RLS. I take it and it has been miraculous at low dose. I haven't increased the dose.
Of course I'm dependent on it. Everyone taking meds for RLS is dependent on them. You are dependent on Ropinirole.
All medications except dopamine agonists and Targinact are prescribed 'off licence' for RLS.
Dear Jools, So sorry for missing your reply last time and many thanks for being kind enough to respond once more. I have looked back and seen your original response - many, many thanks for that. I have had an iron blood test as part of the full array of tests for the medication review I have each year. I am told that my iron is high. Is the full iron panel a different blood test? Can you request one of those on the NHS? Also, apologies for the delay in responding to this message - I have had a family crisis over the past week that is ongoing. Huge thanks for this response - it is very much appreciated.
Full panel iron test should include serum iron, serum ferritin, percentage transferrin saturation and total iron binding capacity.Post your actual results on here as 'high' iron may NOT be high for RLS.
And NICE guidance does state that full panel iron tests should be done, so if your GP refuses to follow UK guidance, they are in breach of duty.
Hi Faith if you have any problems you can tell your GP that Targinact (which contains an opiate med ) is available in the UK and is licensed for RLS according to NICE guidelines so there shouldn't be a problem prescribing that for you .
No simple answer, it`s totally random, my own GP who I spoke with last week again ruled out an Opioid regardless whether Targinact is licensed or not, however he does allow me Dihydrocodeine which I have just restarted, a rerun of Pregabalin having failed to have any effect good or bad at 300mg nightly.
I am in Plymouth and have no problem obtaining Targinact from my doctor. On the patient information leaflet that comes with the drug it confirms that it is prescribed for restless legs ! My pharmacist is brilliant too. I have no dependency issues.
Faith, you have constant RLS because you are on Ropinirole. It will revert to what it was like before you started Ropinirole once you're off it.I had constant, severe, all over body RLS on Ropinirole.
I now have zero RLS. Ever. I can sit through cinema, car journeys, theatre etc and sleep 8 hour's a night.
Once OFF Ropinirole, and on the coree and treatment, you wil also have better control of RLS.
my GP had to be lead by my neurologist. I was fortunate to be referred to one that specialises in rls. It was also because of him that I could get cbd oil to help me sleep, because the opiate cures the rls totally for me but not the insomnia that comes with it. The neurologist also refers me for iron infusion whenever my ferritin drops below 75.
You really do need a referral to a neurologist but I also printed the Mayo Clinic recommendations for my GP and that how I got the referral.
Can you tell us your neurologist's name so we can refer others if needed and where s/he practices as there are so few ones who know anything about RLS.
Who is your neurologist please? I’m on waiting list for nhs but would pay private to see someone sooner. There are loads of neurologists to be found on internet but not sure how many of them specialise in RLS
I'm sorry I don't know anyone that has been recommended there. There are a number of doctors in London but that is aways away from where you live. Your best best is to make a post on the forum asking if anyone knows a good doctor near Southampton.
Welcome to the forum. You will find lots of help, support and understanding here.
You haven't given any information in your profile as to what you have tried for your RLS so I will give you a general answer.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) 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).] It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 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.
I would be very interested to know your neurologist's name - sounds like you have found one who knows something about restless leg syndrome. Lucky you!
I can understand the issues here in the UK. Doctors are being continually criticised if they step outside guidelines and are accused by the press and regulators of prescribing addictive medications for a condition seen by many (but not, of course, the patients) as a mild and nonlethal.
Many GPs, fearing peer criticism, would like to hide behind the “protection” of a consultant, particularly a neurologist. I have seen senior doctors being pillaged by regulators for not observing guidelines. Being criticised in public can be a traumatic experience for a medical professional and this is often in their minds. Indeed, some argue, why would I put myself at the risk. This applies to other professions as well: teachers, police, financial etc. This reflects our society and, in many ways, society has brought these problems on themselves.
I would try and relax your GPs fear of peer criticism (colleagues, pharmacists, regulators) by showing them the guidelines (available online) and letting the, know you understand the pressures they are under. Form an alliance. If they still remain apprehensive, then ask for a neurologist. Neurology waiting lists are long in the UK and you may need to go privately.
I’ve been on targinact now for 3 months and it works most nights. However, on occasion, and for no obvious reason, it does not and I’m also worried about what will happen “down the line”. Increasing the dose will increase side effects and it may loose its affect as well. Hopefully newer drugs with better safety and side effect profile will appear before too long.
Hi Faith re Methadone I'm 83. I retired in 1992 from FMA. I was prescribed Tramadol and Amitriptyline. My Dr took me off Tramadol 2017 stating they were detrimental to mental decline. Almost the day after I was aware of RLS. I begged for Tramadol to continue then, no luck
I've been prescribed as many meds that are available, non of them helped.
Suicidal I was referred to Mr José Thomas Gwent consultant. He gave me a prescription for Methadone. After 4 month working up to a 10mg am & pm, for the first time I was able to sleep from 1-2 hrs to 4-5hrs. I still have the nasty uneasy tingling 24 hrs when resting but I can cope without the necessary walking about.
Mr José Thomas is so understanding and generous with his time. He gives me 4 x 2wk prescriptions every 2 months.
I also noticed if I eat any more than 3mg of sugar in 100mg my legs start again.
I ate one date without thinking, 14 hrs later I had an allergic response which has happened before.
I know it's going to happen, I get a strange taste, my heart rate increases to 200+, I have to sit, bend down because I'm going to fall. I begin to gasp, feels not enough air.it passes after 3-5 mins. On a 26 hr period I had 12 episodes. I relax as much as possible throughout it, may be worse if I panicked. No one in the profession I have told about this, had heard about this reaction even consultants.
Has anyone here heard about this reaction to sugar?
Hi Nightwalker, I've definitely found that sugar makes my RLS way worse, but nothing like the symptoms you describe. I suppose giving up sugar entirely is a small price to pay.
Can I ask, do you live in Wales? I was under the impression that Dr Thomas is only able to prescribe for patients living in Wales, so I'd given up on seeing him, even though I spoke to him on the phone and can tell he's knowledgable and sympathetic.
I'm currently looking for a neurologist who is willing to prescribe low dose Buprenorphine or methadone as both are are red-listed where I live. I have an appointment with Dr Robin Fackrell at Sulis Hospital in Bath at the end of April, but I'm still not convinced he is sufficiently up to date on all this, as well as in a position to prescribe opioids. Any info on Dr Thomas would be massively appreciated - as in can he prescribe if I live outside Wales?
I have seen Robin Fackrell and I found him completely up to date regarding treatments for rls, he wrote to my GP and advised that I would need opioids to withdraw from pramipexole. This was a few years ago.
Are you in the UK Faith? If you are, then you can google your NHS borough's 'drug formulary'. I did it for where I live and discovered that Buprenorphine was 'restricted', ie. red listed.
HOWEVER... and this is potentially huge (and if it works I'll do a separate post on it), yesterday I rang a GP practice in an area where I know Buprenorphine is not red listed. Not only that, but someone on this forum has been able to get it quite easily, after having it prescribed by her neurologist. They had a completely different attitude and were happy to let her try. She now gets it on the NHS without a problem.
So I asked the receptionist if I could join the practice as a new patient if I didn't live in their catchment area, but did work there. And she said no problem, many of their patients were in that situation and they were happy to have them register. So as soon as my neurologist has (hopefully) prescribed Buprenorphine, I'll be leaving my local practice and joining one several miles away. It will be worth it!
I hope that's helpful to you. If you're in the US then it probably won't be. Good luck!
I'm sorry to hear how much you have suffered with this and glad to hear that the opiods are helping. I have never heard about that kind of extreme reaction to sugar but I do have a sweet tooth and maybe that isn't helping me?
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