You can come off ropinirole. I know it is hard but you can do it. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Some have used kratom or cannabis temporarily to help, or a low dose opioid.
Gabapentin or pregabalin are now the first line treatment for RLS. ( 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. 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 of gabapentin or pregabalin 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? 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 multivitamins that have iron in them 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, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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.
No I don't work for a drug company. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.
Hi Paul,I was on 4mg Ropinirole from 2006 until 2016. I had terrible augmentation and the withdrawal was brutal.
You said a few years ago that you had come off Ropinirole completely and your RLS was under control BUT you experienced terrible fatigue and didn't feel yourself.
I mentioned DAWS back then.
Prof. Walker clearly didn't help.
What did Dr Buchfuhrer say?
I still had severe RLS for 5 years after withdrawal from Ropinirole. No depression though. So it wasn't DAWS, just poorly treated RLS.
As soon as I switched to low dose Buprenorphine, my RLS symptoms disappeared.
So, is the issue severe RLS symptoms thaf affect you during the day and at night, or are the symptoms depression and sadness when off Ropinirole?
If the latter, it may be helped by taking trazodone.
If it's severe RLS that doesn't settle, then treatment like iron supplements/infusions or trying Buprenorphine may help.
I have AT LAST stopped taking ropinirole having taken it for more than 15 years. It's not easy but it can be done. With the excellent advice and support from this forum I'm getting somewhere at last. I've had to tell the GP what I want because they know little (i.e. nothing) about RLS but follow the advice from Sue and Jools because it's invaluable. I'll update my profile because the journey is still in progress however I feel positive for once
Hi All I've been on Ropinarole since 2014 taking 4mg per day. I was suffering with Augmentation for quite a while and my Doctor didn't know what to do . If it wasn't for this forum whose advice is invaluable I don't know where I would have been.
I am now down to .5mg and dropping down to 0.25mg today. Yes I've been through the horrors of coming off this drug. Hallucinations pain in all my joints hearing conversations that aren't happening , insomnia , anxiety and generally feeling like there is no escape
I spoke to my doctor and explained to him what I have been told by the guys on this forum. He didn't know anything about RLS. But now he is well clued up. I had full blood tests Iron tests and he has now put me on Gabapentin and Buprenaphine patches and hey ho I have no rls symptoms and feel great.
It's all about educating your doctor.
I must say thanks again to all you guys on this forum.
Sue answers the best. However, I was on long term ropinirole and did come off it. It was truly a nightmare. It took nearly a year to come off 8mg.I live in the United States and finally found good doctors which helped me. I was prescribed various opioid drugs to help with the pain and distress. I finally am on Suboxone and currently on a low dose. I went from nearly no sleep to now sleeping 6 to 8 hours a night. Please work yourself through this crisis. You will be glad to be free of this drug.
Im in the same boat. 4mg of ropinerole for 15 years. Now im down to 1mg plus 600 gabapentin and is working great. I feel rested during the day and the symptoms i used to have during the day are gone. So far so good.
I was on Ropinirole/Pramipexole for over twenty years and suffered terrible augmentation. I decided in July of this year that enough was enough and I came off completely. I was on 1.5 mg and reduced to 1 mg started to suffer with little sleep.
I then decided I would go for it as I was already suffering and came off completely. I’m not saying this is advisable, it’s just what I decided to do. You probably need to get proper advice about this. It was extremely difficult, I had to take 5 weeks off work due to hardly any sleep.
I can’t tell you how pleased I was I took that decision. It took a while but I finally started to see I wasn’t experiencing episodes during the day (roughly two months) I then noticed I could watch tv in the evening without suffering.
I really didn’t want to substitute one drug for another but I heard that magnesium could help, took this for around a month , not sure if it helped or not to be honest. Stopped taking this around two weeks ago and haven’t noticed any difference.
I think you have to give it a chance to get it out of your system.
I’m not sure why someone would tell you that you can’t come off of the meds? Anyway I too was taking DAs since around 2007. In the end I was taking 9 mg of the Nuepro patch. It took me 18 months to eliminate the evil from my system. I had severe DAWS and suffered horribly with depression, anxiety and no motivation. It has been about 2 yrs and although I have made progress, I’m still not myself. I still have bouts of extreme depression and uncontrollable crying. The anxiety is gone but the depression continues. I take Wellbutrin for the depression and methadone for the RLS. So you are not alone and you can come off of the medication, slowly. I’m sorry for you pain. It will get better.
Hi paul , yes i was on Dopamine Agonists inc Ropinirole for 20 yrs , diagnosed privately as Gp clueless. When i hit problems he changed the DA , when I suggested Augmentation he dismissed it and upped my dose to 6mgs. On holiday this year in March I realised my legs were awful pretty much 24 hrs a day plus my arms and the plane journey home I thought was going to go made .I then made the decision to come off them at all costs , the first 2mgs I did quickly and then it got harder and harder but I followed Sues advice and weaned very slowly . I wont lie it was HELL , I would crawl up and down the lounge sobbing and felt as if I was going abs crazy . Many many nights with no sleep , falling over walking but asleep and fell asleep driving twice . I was suicidal on many , many nights and it did get harder but Ive been off Ropin 6 weeks tomorrow and days and evenings are 100% better. Im still withdrawing at night but getting more sleep . I take Gabapentin , Dipyridamole , Codeine and Clonazepam. I could do with a stronger Opioid for the withdrawal but Gp wont give so have another private appt booked . Good luck , you can do it ,its the hardest and cruelist thing I have ever done but finally there is light at the end of the tunnel !All the best A
I was on ropinirole for 16 years. I had gotten up to 8 mg a day and it took me 3 years to get completely off of it. Coming off of it I had increased RLS, almost no sleep and was miserable. I stuck with it though with absolutely no help from the medical community except for Dr. B who tried to help but eventually told me I was in the 3% that he couldn’t help. This is because I couldn’t tolerate opiates.I am certain that ropinirole damaged my brain. I suffered extreme depression once I was off of it and am still trying to manage the depression. I will never be the same person I was. But I couldn’t continue on it with severe augmentation. By that time damage was done.
One more thing to add. Dropping the last .25mg of ropinirole was the most difficult stage for me. I had a very hard time for 4 weeks then things began to improve. It was good to be free of that horrible drug!
Hello Browne1212. I Pregabalin been on various Dopamine Agonists meditation for many years the final one being Ropinirole final dose 6mg / day and was advised by RLS- UK to withdraw from it which I did very slowly from 23 October 2023 and have been free from it for. just under a week. I was prescribed Pregabalin by my GP as recommended by the consultant I saw privately doctor Jose Thomas at Spire Hospital Cardiff. Like you I got stuck on 0.25mg Ropinirole but when I started to take the Pregabalin I decided to completely stop Ropinirole, it was hard and went cold turkey as they say. But everyone on this forum note that they suffer really extreme RLS and severe sleep deprivation when they stop taking Ropinirole no matter how minimal the final dosage was, anyway I was desperate to come off it so decided to suffer the consequences of stopping at 0.25. You ask what the symptoms are, well not pleasant, as I said above, really bad RLS anytime of day or night in any part of the body and lack of sleep so you don’t know what time it is and can hardly put a text together or make a drink. But this is relatively short term, repeated here as 2 to 3 weeks which is short if you’ve been suffering RLS for decades. It takes about 3 weeks for Pregabalin to kick in and won’t fully work until you are off Ropinirole. I’m at the intermediate stage, waiting for Progabalin to kick in and increasing dosage by 0.25mg every couple of days.
So I’m afraid it’s a matter of how much you want your life back to a more normal state and your level of determination to achieve it. My willpower is no greater than anyone else’s but I do have a sense of achievement and can tell you that ime in a better place than I was 7 days ago. Go and see your GP try and build bridges, you need him or her on your side and take all the information you can find on RLS, augmentation and it’s treatment. There’s so much out there and would recommend the Mayo Clinic Algorithm.. put it in a file, not just loose pages that are easy just to drop in the bin, but something that looks professional don’t drown them in information, they won’t read it but the salient points will give you the best chance of them buying into it.
If all else fails change your GP or Medical Practice but. In the meantime be strong and I know you will have great support from us all. Best wishes HipHop1972
Hello Browne1212. and anyone else who reads my reply to Brownie1212.
My apologies as I need to make a correction to my post, I started reducing Ropinirole in October 2022 and not as stated 2023. Also I start post with I Progabalin ( ignore that as I’m not called Progabalin) but I have been on many different Dopamine Agonists, should be ok after that .
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Appointment with Dr Robin Fackrell
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Lifetime of RLS
Side effects from long term usage of Pramipexole
