Hello everyone. I hope as you read this your legs are calm and settled and that your life is good. I've suffered with RLS for about 20 years and as it has progressed my life has gone into the toilet. I presently employ Neupro Rotigotine 2 mg patch to treat it and prior to the patch I took Ropinirole. I realise now that I've experienced more than a few of the impulse control disorders recently attributed to the dopamine agonists without being made aware of them by a doctor or GP and they have contributed to a decline in the quality of my life. I've scheduled a consultation with my GP for early April because I was going to ask for an increase in the Rotigotine prescription; that was, until I joined RLS-UK last week and had my eyes opened to what a mistake that would be. Rotigotine is the only medication I take at all. I don't drink because it makes the RLS worse. I ingest very, very little caffeine, but I do love chocolate, dairy and sweets. My iron levels were tested for another reason recently and they tested in the low range of normal. Prior to my upcoming GP consultation I will deliver material from RLS-UK to my GP so she is better prepared to develop a treatment plan for me. I believe I will request iron injections and either Gabapentin or Preglabin in accordance with current guidance from the Mayo Clinic. I've no idea the correct dosage and hope I'm not met with resistance from my GP who won't even be able to see the large grey bags under my eyes or witness how tired I feel. Now, if you've made it this far in my post then please don't leave me without some guidance if you've had a similar experience or can provide useful information for me to share with my GP. I just want to sleep again, desperately. My life can't decline any further without going under the ground which I'd rather not as I believe I can get back to helping to improve this planet again if I could just get some rest. Thank you.
Newbie looking for advice ahead of GP... - Restless Legs Syn...
Newbie looking for advice ahead of GP consultation
Welcome to the forum. You will find lots of help, support and understanding here.
To come off Neupro (rotigotine) you can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount which would be 3 mg. Since you can get ropinirole in .25 tablets this is the easier way to reduce.
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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 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 and your withdrawal symptoms have settled. 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 divide the doses on 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 of pregabalin)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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 have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Hello Sue, Chris and Joolsg and thank you very very much for such a wealth of detailed information. I feel as though I've been well into the weeds on my treatment for RLS and now helping hands are reaching in to help pull me out. Is it alright if I print all of your advice and put it into the envelope I plan to deliver to my GP tomorrow in advance of my consultation next week? As to the question of where I am, I live about 20 miles south of Glasgow. I doubt NHS services for RLS comparable to that available in England are on offer to me here. I've been on a waiting list to see a sleep specialist for six months already and likely will be on it for much longer as the specialist only comes to my local hospital once a week. At least I'm now armed with a plethora of questions and information for my GP. I really can't thank you enough for giving me so much information, but even more importantly, for giving me hope. Take care.
You can certainly print it out but the doctor probably won't pay any attention to it. Instead you would be better off printing out the new NICE Guidelines stating that DAs are no longer the first line treatment and that gabapentin or pregabalin are and the RLS-UK information on coming off a DA and on iron at rls-uk.org/
Sue's advice on coming off dopamine agonists and starting gabapentin or pregabalin is in line not only with the Mayo Algorithm but also with the very recently (February) updated NICE guidance on drug treatment for RLS -cks.nice.org.uk/topics/rest...
- EXCEPT that the CKS doesn't yet give the correct way to start and increase gabapentin or pregabalin for RLS: the info it gives is for prescribing for neuropathic pain. Sue's info is correct for RLS.
Welcome.You have 3 years to bring legal action if your doctor failed to warn you about the very high risk of ICD.
Many law firms will act on a no win/ no fee basis.
Leigh Day and Switalskis have successfully acted for hundreds of RLS patients.
You should NEVER have been switched to Rotigitone! That is sheer ignorance.
See Dr Berkowski's youtube video explaining why. Augmentation haplens very quickly.
Also please complete a side effects report for both Impulse Control Disorder AND drug induced worsening for Ropinirole AND Rotigotine to stop doctors prescribing these dangerous drugs to other patients.
Follow RLS-UK withdrawal schedule abd print off ICD/Withdrawal and iron therapy pages for your doctor. Links below.
youtu.be/Tz7g9sxS0_I?si=6WN...
You write that "My iron levels were tested for another reason recently and they tested in the low range of normal." Unfortunately the 'normal' range is very wide, and RLS sufferers need serum ferritin levels over 100 and preferably over 200 - and that's after a fasting test as described by Sue. Were you given your ferritin and transferrin saturation (TSAT) numbers?
As for asking for an iron infusion: yes, ask! But at present it remains difficult in most NHS areas to get an iron infusion unless you are diagnosed with iron deficiency anaemia.
Hello Sue, Chris and Joolsg and thank you very very much for such a wealth of detailed information. I feel as though I've been well into the weeds on my treatment for RLS and now helping hands are reaching in to help pull me out. Is it alright if I print all of your advice and put it into the envelope I plan to deliver to my GP tomorrow in advance of my consultation next week? As to the question of where I am, I live about 20 miles south of Glasgow. I doubt NHS services for RLS comparable to that available in England are on offer to me here. I've been on a waiting list to see a sleep specialist for six months already and likely will be on it for much longer as the specialist only comes to my local hospital once a week. At least I'm now armed with a plethora of questions and information for my GP. I really can't thank you enough for giving me so much information, but even more importantly, for giving me hope. Take care.
Just to give you some hope. I read your bio.I am now completely RLS free on a tiny dose of Buprenorphine. I take 0.4mg sub lingual pills at night and NEVER get RLS night or day. It took years to find the right treatment and lots of research and fighting.
If you see the right doctor- you too can be RLS free.
Where are you? We can recommend one of the very few UK doctors who know more than the basics.
As you mention RLS-UK hopefully you've already seen the 'Medications To Avoid' section:
Private iron infusion available via the Iron Clinic for around £800. If you live near St George's in Tooting, the Royal Cornwall in Truro or Salford General you might be lucky enough to get an NHS infusion.See a good specialist privately for £250 -350 & they will arrange iron infusions/opioids to get you off Rotigotine and safely on to better meds.
Hello Sue, Chris and Joolsg and thank you very very much for such a wealth of detailed information. I feel as though I've been well into the weeds on my treatment for RLS and now helping hands are reaching in to help pull me out. Is it alright if I print all of your advice and put it into the envelope I plan to deliver to my GP tomorrow in advance of my consultation next week? As to the question of where I am, I live about 20 miles south of Glasgow. I doubt NHS services for RLS comparable to that available in England are on offer to me here. I've been on a waiting list to see a sleep specialist for six months already and likely will be on it for much longer as the specialist only comes to my local hospital once a week. At least I'm now armed with a plethora of questions and information for my GP. I really can't thank you enough for giving me so much information, but even more importantly, for giving me hope. Take care.
Yes. Print it all off. We have to educate the medical profession.Lawyers are required to update their knowledge with hours of continuing education each year. That doesn't apply to doctors or knowledge of RLS! Even though RLS is the most common neurological disease in the UK.
RLS-UK have campaigned for years to get UK medical Profession to learn the basics of RLS. RCGPs told the BBC and Chair of RLS-UK that they will add RLS to GP curriculum from August.
The US experts are 10 years ahead. All the info is in the Mayo Clinic Algorithm and the new AASM guidance published in 2025.
Any UK doctor that cannot be bothered to update their knowledge is acting negligently.
If you feel like bringing a test case against your UK doctors-
Kimberley.Bradfield@switalskis.com
wants to speak to someone suffering Augmentation. She will act on a no win/no fee basis.
But as you're in Scotland- she may refer you to a Scottish law firm.
Hello Sue, Chris and Joolsg and thank you very very much for such a wealth of detailed information. I feel as though I've been well into the weeds on my treatment for RLS and now helping hands are reaching in to help pull me out. Is it alright if I print all of your advice and put it into the envelope I plan to deliver to my GP tomorrow in advance of my consultation next week? As to the question of where I am, I live about 20 miles south of Glasgow. I doubt NHS services for RLS comparable to that available in England are on offer to me here. I've been on a waiting list to see a sleep specialist for six months already and likely will be on it for much longer as the specialist only comes to my local hospital once a week. At least I'm now armed with a plethora of questions and information for my GP. I really can't thank you enough for giving me so much information, but even more importantly, for giving me hope. Take care.
To add a few things. If you get an iron infusion wait 8 weeks before you have your ferritin tested again. If your doctor won't prescribe one you can get one privately at Https://glasgowprivateclinic.co.uk/wp-content/uploads/2024/10/GPC_IronInfusions_Doc2.pdf
If you want to see a neurologist privately, there is Dr Colin 0'Leary neurologist in Glasgow that Scottie99 saw - no idea how satisfied he was but you can message him to find out and if you do let me know what he says so I can add it to my notes.
dear Killie,
I feel your sadness, I was so very in the the same place….
I checked my Bit B levels , they were sky high and I stopped taking multi vitamine.
Most of my RLS is gone. Only when it gets to warm I feel it coming.
Sending you some strength from Holland xx
Dear Kille,
Sorry for your situation as I know it from my own experience but benefitted greatly from the advice given on this forum especially from our "leaders" Jools and Sue. Please follow their advice.
My addition to their comments is whether or not you have experienced "augmentation" yet or not. In my case pregabalin and gabapentin did not help when I augmented and I had to use a low dose opioid, buprenorphine the same as Jools. I use 0.5mg per day and am free of RLS but struggle with the side effects of nausea and hot/cold sweats. As Jools said it takes a long time to get to a winning formula but you will get there!
Goodf luck
Davchar23
Hi there, I’m so sorry you’re in this desperate situation as many of us are. Having my Drs been trying everything for me to no avail I was suicidal walking the floor for hours until saw Jose Thomas Gwent consultant who px Methadone. Eventually I was on 10mls x 2 daily. It was and is allowed my to sleep 4-5 hrs instead 1-2 hrs max and daytime just buzzing constantly. If I ate any sugars or salty foods I’m in trouble for 20-30 hrs I’m gasping bent over, pulse racing 150 beats for 3-4 minutes I think I’m going to die 20-24 times during that time. Does anyone else have that reaction? No one else Drs consultants etc has ever heard or seen of this reaction, I need to know.
I’ve lost 5 stone in a few years because of the diet restrictions. Sleep is so wonderful to me. Thank God Methadone has given my life back. I wish all of you my love and best wishes for you to find your solution and be able to sleep and enjoy life. God bless you XX
I'm so sorry that you have such severe reactions and sensitivity. I thought I was alone in the racing heart with very high beats-per-minute episodes. Mine occurs when I am playing sports. It's like my lungs aren't getting full breaths! And I'm a very fit 64 year old! Joolsg suggested that it's a side effects of opioid. i take only 50mg Tramadol nightly as well as my Gabapentin. All these giggling side effects are worrisome, I research every one and drive myself bonkers. Oh well, less/no RLS is worth it.
Hi there, thank you Purpleyarn for your fast response, that helps a lot. Bless you XX
gapapentum works well for me. started at 300 mgm nightly. I increased it to 400---I see my neurologist and will ask for another boost. or some low dose valium to help me sleep, I am85
300 mg is just a starting dose and even 400 mg is a low dose. The usual effective dose according to the Mayo Updated Algorithm on RLS is 1200 to 1800 mg so you can certainly increase it.
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 take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason.
I have slowly come off Ropinerole as I had definitely suffered augmentation. I also previously came off clonazepam and earlier pregabilin. My doctor . Pain management and physiotherapists are at a loss and they were solutions we have tried. I suffer terrible night sweats and agonising pain in legs and knees. I have had steroid injections in my knees as there was fluid and cartilage arthritis. I am due to go back in April and May to orthopaedics and pain management.
When I am in pain - day and night the back of my knees swell. Like an orange but MRI and CT scans can't see bakers cysts. The knee consultant thinks it is muscular. Pain equals upset tummy, swelling and torturous pain. I have to stand till my knees and legs lock and hurt myself with pressure. Currently I am getting 2-3 hours sleep maximum and feel sick- i am hoping it is withdrawal and then we can start again. None of the medications have worked so far. My bloods are apparently normal but I will ask for further tests . No one can give me answers. I have osteoporosis and scoliosis so it was thought to be stenosis but not found.
I exercise most days without a problem till I try to sit and relax. I have Thera plus and a tens machine with no effect and have tried a weighted blanket. I take pain killers with no effect.
Any advice before I go to my next appointments? Everyone is confused and at a loss- a neurologist just laughed at me! I have suffered for over seven years and it has got worse and worse.
Would Buprenorphine be any help when my withdrawal ends. I live in Epsom in Surrey.
Thanks for any guidance.
Yes buprenorphine is what you need now. You will need to see a neurologist who can recommend your GP to prescribe it.
Dr. Oliver Bernath - Consultant Neurologist and Sleep Physician at Queen Victoria Hospital in East Grinstead and Guy's Hospital in London will prescribe it. You can see him privately for around £250 - £350 or ask your GP to refer you to him.
If you were on pregabalin when you are on ropinirole, the pregabalin wouldn't work so if so you could try it again. Start it 3 weeks before you are off ropinirole at 75 mg and after you symptoms have settled from the withdrawal increase it by 25 mg every couple of days. The usual effective dose is 200 mg to 300 mg.
You have received all the information you need from Sue , Jools, Chris and others (wish I could meet all in person …. I owe my life to them! 🙏)
I just want to encourage you … I was where you are 2 months ago … went through the hell of withdrawal from Pramipexole … am at the other side … on 600 mg Gabapentin now .and sleep very well . I have my life back! 🙏
I’m still waiting on iron infusion to happen which I’m hoping will enable me to take less Gabapentin, but for now I’m so happy with where I’m at … and forever thankful for all the help this forum provides! It’s a God sent!
Don’t loose hope … you’ll get to the other side of this. Advocate for yourself … most doctors don’t have the necessary knowledge of RLS to help us.
I’m in Canada, have a lovely doctor who is always willing to help. BUT…. she said the other day … if Gabapentin doesn’t work for me, we can always try ropinirole !!! Another DA!!!😳😳
Good luck for your journey … you’ll get there!
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