Found this forum at 4am…you all know the drill! Diagnosed with RLS through a sleep study (performed because of insomnia and shallow sleep/frequent wakes) Jan 2020. Doc (who I am no longer seeing) prescribed 4mg of ropinirole daily, which I now know is a bonkers dose to start with. Once I figured out how to live with the extreme nausea, it worked for a bit and then—now, what I have to think is augmentation (my new doc does not know what that is). On iron supplements now and stepping down from ropinirole. Currently at 1.5 and dropping .5 each week. New doc has offered gabapentin and I may take this but would like to get completely off ropinirole first. It is miserable, though. I don’t have any of the compulsions I have read about but I have classic “fire ants in my veins/need to move” RLS day and night. And pain. When augmenting I was having pretty severe pain at night and that is now continuing but it is day as well as night! Take multiple doses of ibuprofen and paracetamol/acetaminophen at night but this doesn’t do much good.
Would like to hear from others that have stepped off of ropinirole that it will be okay eventually. I am just trying to get through it and fear the worst is yet to come.
And honestly scared to try gabapentin, because I truly wish I had never medicated for RLS in the first place. I feel like the ropinirole has made it a million times worse.
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0.5 mg a week is too fast. I'd suggest 0.25mg every 2 weeks. It's very tough but possible. Many of us have done it.Johns Hopkins recommends a drug gree withdrawal to assess baseline RLS, but that's really difficult. I needed tramadol ane cannabis to deal with withdrawal symptoms.
Gabapentin or pregabalin (lyrica) should be started 3 weeks before last dose of Ropinirole to be fully effective.
Thank you for this—I will slow it down to .25mg reduction every two weeks and hopefully that will lessen the withdrawal I’m experiencing. I am talking to my GP Monday (who is a lovely guy but doesn’t know much about RLS and has been no help at all on the step-down schedule) and I will ask him about codeine or tramadol to manage the withdrawal symptoms at night. Gut instinct says the request may not be well-received but it doesn’t hurt to try. Truly, much appreciated.
Doctors in the UK aren't taught anything about RLS at med school or during GP training so we have to do our own research and print off helpful articles. He may suggest another dopamine agonist like Pramipexole or the Neupro patch but they also cause augmentation.Many GPs are quite open to reading more about RLS so you may be surprised.
My old GP was appalling and suggested drinking milk to deal with the 'aches and pains' of horrific withdrawal!
My new GP has been outstanding, has listened to me and agreed to prescribe Buprenorphine after nothing else has worked in the last 5 years.
Sometimes that's probably worrying, but I don't think this one is dangerous.
It's OK to target training GP education, I still agree.
However, a couple of things -
GP training is separate to medical education. All doctors do the five year university degree, followed I believe by a years "pre-registration" work as a "junior". At least that's how it used to be.
After that, they specialise as physicians, surgeons etc At this point some may do GP training.
Maybe it's here that RLS needs more consideration, NOT in the basic medical degree.
Some may later go on to specialise in neurology. Same applies.
Another thought.
As a necessity doctors are trained to investigate, diagnose and treat conditions. Even if this includes mental health issues, it's still a "medical" approach.
You will even note that "specialists" have advanced knowledge of diseases of particular body systems, e.g. neurologists, urologists, cardiologist, endocrinologists etc.
Nothing wrong with this, but it will affect their "mindset" and hence the needs they see people as having. I could say more on this but it's tangential and possibly risky.
The most time ever, perhaps that a doctor will spend with a patient is in surgery. In which case the quality of interaction, doctor-patient is always limited. The doctor rarely "gets to know" a patient.
The point : There are significantly more nurses than doctors AND they can spend more time with patients.
Nursing significantly changed in the early 1980's. Nursing education itself changed in the early 1990's.
It moved away from nursing care being provided on the basis of the patient's medical condition to care being provided on the basis of the individuals' needs.
Thus, to some extent that somebody has RLS isn't entirely relevant. What is relevant is that somebody has difficulty sleeping!
In addition, the nurse has to consider ALL needs, not just the treatment's needs.
It seems it may be easier to give more emphasis on the needs of a person with RLS in nursing curricula. Some of these needs overlap with other conditions. Nurse education is not condition based, it's not necessarily a matter of introducing yet another condition into an already packed medical degree.
I went for years seeing doctors, describing my symptoms pretty well I think, but getting no diagnosis. It was after just chatting to friends that one, a nurse I (and I think a competent one) said I should go back to my doctor and ask that we consider restless leg syndrome. Bless her!!I've had two other nurses at different times try to convince me I should drink tonic water for RLS . They were taught this in training - to use it for cramp AND restless leg. I wonder if it just made their patients shut up and go away.
I'm a great believer in keeping hydrated - but don't think tonic water (quinine) does anything special.
Nurses spend more time with patients in hospital or in care homes etc. So it would seem logical that they'd come across RL more than doctors?
Joolsg has given you excellent replies - as ever. I just want to add a link to this very recent paper that gives an update about te knowledge and especially treatment of RLS. It is very well structured and well written, you could even just read through the boxes and then all items are covered. Show to your gp?
Myboylau - I’m new to this group. I’ve been on 4mgs of Ropinirole for a few years now. I went up steadily from 1mg. Why are people coming off it?? It’s been my saviour at night. What else are people taking?
Because, at some point it stops working as effectively as it did initially. This is called tolerance. Doctors often respond by letting you increase the dose. But another issue is that the effectiveness of your daily dose ceases more quickly, like you will get symptoms in the morning, and earlier and earlier. Your evening symptoms may also move forward, that is tet start earlier in the afternoon/day. And most annoyingly, the RLS symptoms, while typically in your legs, will also he felt in your arms and arms other body parts. This is called augmentation. And actually, reducing your dose of ropinirole (or another DA, as this particularly applies to DA dopamine agonists) and NOT the standard increase of the dose will improve these symptoms.
If you spend some time reading posts and replies in this forum, you'll begin to understand. You are currently taking the maximum recommended dose. Some specialists think it should even be 1 mg only. Thus, be forewarned. If this dose is (again) starting to fail, don't increase - even if your doctor says so. Rather slowly very slowly reduce the dose. Not a nice process, but everybody is better off in the end.
If it is working for you that is great—no need to make a change! People like me are coming off of ropinirole because of something called “augmentation”. Basically, ropinirole is a type of drug (a dopamine agonist) that, for some people, stops working after a time (varies by person) and actually starts to make your RLS worse, When that happens, the only good option is to come off it and try a different type of drug, or combo of drugs, not in the dopamine agonist category. Unfortunately coming off of it is a pretty awful experience, especially if you try to do it too fast (like I have been doing) or cold turkey. Joolsg , others with deeper knowledge—feel free to correct anything I’ve gotten wrong.
Thanks for your reply. Actually I’ve been having problems in the evening lately. As for coming off Ropinirole. I once went to stay with an elderly relative and forgot it. It was the worst night of my life. As soon as I lay down it started. Tried everything. Not a minute’s sleep all night. I wouldn’t want that to happen again. The GP who prescribed it for me has since retired. Not sure if any of the others in the practice understand.
If you take a dopamine agonist every day normally, then you will have become physiologically dependent on it
This means that if you stop taking it then you will experience withdrawal effects. These will start within 24 hours after the last dose. If you forget to take it one night then you will experience withdrawal effects that night. If you don't take any the next couple of days, this will worsen.
Many people get really nervous about missing it. I used to set an alarm on my phone to remind me. Was very careful to always have a few extra in stock. When I went abroad I'd carry my whole supply on me.
They do say that withdrawing from a dopamine agonist is worse than withdrawing from heroin. Some people never actually succeed.
If you do decide to withdraw then it's highly recommended that you reduce the dose in very small steps and over a fairly long period of time.
I'm sorry your GPs don't understand, not many do. It's really important that you yourself understand and I suggest you learn all about the signs and management of augmentation.
Sounds familiar all this. GP part especially - there is a chasm in their knowledge & it's impossible to get a good Neurologist who can help at the moment.
I have been stepping down from 10-15 years @ 2 Mg daily to my first month of zero - still taking 3 x 300 Gabapentin tabs a day. I don't really know what Gaba withdrawal would be like yet, but that's next to go.
The issues with lack of Ropinirole in my body have been the return of sleeplessness brought on by bouts of convulsions in abdomen & usual 'sizzling' of my system like an engine idling. I have no idea how long it takes to be symptom free of the withdrawal or what it actually feels like. I just persist with it as I know the augmentation was terrible.
Now on Targinact (March 2021) as a replacement for Ropinirole but that doesn't seem to cope well holding back RLS without the Ropinirole & the constipation is Mega. Saying that, I only have a window of half the night with sleep issues as I do go off eventually.
I have had trouble with my Pramipexole, but rather than cutting it out I have divided the dose, 1/2 in the morning and 1/2 at night. I have noticed that I don’t get so hungry which is good as I’m overweight from binging when awake with my restless crawly legs. I don’t think I’m twitching so much and the crawly feeling is less. But! My sleep is getting shorter and shorter, I am now only sleeping a few hours a night. I do get to sleep straight away but whatever time I go to sleep am awake a few hours later for the rest of the night. Thankfully I’m so tired I go to sleep straight away and have some sleep usually so I can at least do something in the little hours of night. I can’t stand being awake in the house at night exhausted but not sleeping and too tired to do anything, but needing to. So I think I have it the best way round at the moment, but I’m not holding my breath!
I suffer mostly from PLMD. if you read the blurb it says PLMD occurs mostly in the day not so much at night. I beg to differ. My legs have a life of their own some nights. And even my arms. I think I’d be afraid to tamper with different tablets. Think I’ll keep the status quo for now.
I was on ropinerole for 2 years and decided I had enough. Nightmares and cumpulsions were geting the best of me so I went cold turkey...not the recommended thing to do..but I did it. Had the sweats and a few withdrawal symptoms but nothing like rls or the side effects of taking the stuff in the first place. I have been sleeping and without rls ever since. I dont understand it because I have suffered with severe rls for years. I do have iron infusions that cost $150 every 3 months so I am happy to do it.
That’s really interesting. I’m coming off Ropinerole slowly and I take Gabapentin alongside it but I was wondering how I might be when I finally come off. Isn’t it strange that the drug we took to ease RLS eventually makes it worse, and then when you finally stop, it makes it better! I still can’t get my head around it!
Gabapentin does not cause the same side effects as Ropinirole as far as I'm aware. If you're having that much trouble and pain I would start the Gabapentin.I started on Ropinirole but my doctor didn't know what she was doing and kept increasing the dose while neither one of us realized that it was the Ropinirole that was likely making the RLS worse. Mine are also extremely painful but they're thankfully only at night.
I am now on Gabapentin (600mg 3x/day) and Mirapex (2.25mg at night), plus Magnesium (750mg a few hours before bed), 65mg Iron in the morning, and Ibuprofen and Tylenol at night. Oh, and over-the-counter Magnesium spray and sometimes compression socks.
Getting off the Ropinirole is difficult, and I'm still working on finding a treatment regimen that works 100%, but one has to be out there.
I too am trying to end my requip hellish addiction. Thought it was a wonder drug when first prescribed to me over 30 years ago. My current GP finally gets it and prescribed gabapentin to help as I reduce requip dosage. Your dosage is much higher than my starting dosage. I've been fairly lucky that .5 mg worked for years. My plan (along with GP's advise) has been to SLOWLY taper off. First week take 1/2 dose three nights. Second week four nights, etc. I also started gabapentin 100 mg first month increasing 100mg each month as I decrease requip. 300mg will be maintence dosage. It has worked so far...not perfectly but it's a start. Many that have done this said it can take months!
Currently I'm holding at .25 mg daily and 200 mg gabapentin because I was accepted for a device trial that has shown promise. I will definite update on a separate post when I get started!
My hope is to eventually not need meds. I feel requip has intensified my symptoms (augmentation) but will have to see how it goes after I am completely off requip.
Hi again—it is the OP here, still working my way through step-down from ropinirole in .25 mg decreases. I have had to escalate my step-down (long story short, I am unemployed but in final stage interviews for several jobs, and I HAVE to get through this step-down—and past the horrible first month totally off ropinirole—before I start a new job). So, instead of stepping down .25 every two weeks, I am doing it weekly. I am currently at .75 so have just under 3 weeks to go to get to the dreaded first hard month at 0mg. It is not ideal to go fast but logistically I see no other way given likely timing of new job start (if I can manage to be coherent in interviews and actually get an offer, that is). This last stepdown to .75 has been pretty bad and sleep is fragmented or not happening every night for to leg pain and need to move. My doc gave me 15mg codeine/500 mg paracetemol co-codamol tablets that I take at night. I have to take 2 (1 does nothing) and honestly find them no more effective than just taking plain paracetemol. My question is—do I ask him for a higher dose of co-codamol or should I ask for something like tramadol instead? I just need something to get through the next seven weeks. I am also going to ask for a sleep aid for this time period. I am quite miserable and honestly so glad I am not working as I would not be able to function at work.
Advice from those who have lived through this greatly appreciated. Thank you.
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