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.
Advice for discussion with GP please
Medication help
Escape from DA Augmentation
Holistic first consultation of RLS sufferers with their doctor and use of intravenous iron therapy 
Please Help !!!!!
