Good Morning, My restless legs started in 2003 when I was pregnant with my son, after I had him they went away. Then around 2019 they came back with a vengeance.
After an appointment with the Doctor I was put on Ropinirole, over the years my dose has gradually increased.
I have been on 1.5mg for quite awhile but after a few months of unsettled nights my dose has increased and is now 2mg daily.
I have recently been seeing articles about Augmentation. And now I have worries about this as I have been on Ropinirole for quite a few years. My condition has definitely improved on Ropinirole.
I read that this drug is banned in America which is a worry as someone who is taking them. After 5 years on them is it time to speak to my Doctor for a possible alternative.
Many thanks for taking the time to read.
Written by
deluxebar
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Welcome to the forum. You will find lots of help, support and understanding here.
Ropinirole is not banned in the US but it should be for RLS.
Yes you are suffering augmentation and need to come off it. 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.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
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 or you may be able to reduce more quickly. 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.
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 you are off ropinirole for several weeks 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.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 not ask your doctor 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. 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.
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...
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, C, 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.
It's not banned in the USA, but the new Mayo Clinic Algorithm on treatment of RLS relegates it from first line treatment.The new American Academy of Sleep guidance will make it clear that all dopamine agonists should be prescribed only in end of life scenarios, where the short term benefits outweigh the long term severe complications.
As you've been on Ropinirole for 5 years and you've had to increase the dose to 2mg, that is your first warning sign.
These drugs are miraculous at first and let you sleep and then they turn on you.
The first sign is having to increase the dose. Then you start to get daytime RLS and car journeys become difficult. Sitting in the cinema is difficult.
Then it moves to your arms and hands.
So, our advice will be that now is a good time to get off the drug. It will eventually cause severe augmentation, so better to go through the hellish withdrawal when you're younger and fitter. There are people in their 70s and 80s on these drugs and withdrawal becomes more dangerous as falls are very common due to exhaustion.
The RLS-UK site has printable help sheets on withdrawal from dopamine agonists, so show to your GP and discuss a withdrawal and ask for monitoring. You will need a low dose opioid like codeine, tramadol or oxycodone to settle the severe RLS at each dose reduction and iron blood tests to ensure your serum ferritin is above 200ųg/ L ideally.
You start by reducing 0.25mg of normal release Ropinirole every 2 weeks. Take the low dose opioid for a few nights to settle increased RLS.
Your GP will need to prescribe pregabalin or gabapentin to replace the Ropinirole. You start taking them around 4 weeks before your last dose of Ropinirole.
Start pregabalin at 75mg at night when you're down to 0.5mg of Ropinirole. Increase pregabalin by 25mg a night up to 100mg and stay at that dose until you're completely off Ropinirole. Then you can increase by 25mg a night up to 150mg.
Read all you can as your GP will not have been taught anything about RLS or the dangers of dopamine agonists like Ropinirole. Did your doctor warn you about Impulse Control Disorder ? Gambling and overspending are actually very common on Ropinirole. There have been hundreds of cases against GPs for failure to warn about this.
Here's the RLS-UK website for bedtime reading. The withdrawal schedule is under USEFUL resources.
Many thanks for your helpful information. I have only ever had one blood test for my iron levels which was 3 weeks ago but Doctor said that was fine (125ng) so increased my Ropinirole to 2mg which I started 2 days ago. I have decided to go back to 3 tablets tonight and doing an e-consult today to ask for a change of medication. I realise I'm in for a rough few weeks but everything is crossed for a hopeful outcome. 😀
as said above, please dont take the advice lighthearted or be lead by your Drs, i know it’s haed to believe but they dont know best unfortunately. The higher dose you go the longer it will take to get off it and it will turn on you thats a pretty much given. I know this may be herd to read but the experience in real life on here out weighs the Drs old fashioned big pharmaceutical data all day long.
I agree 100% with the above responders. I realise it can be very hard to go against your drs advice, but Unfortunately your dr just does not know. And yes, you will be in for a rough few weeks, but you will have to do this sometime, and the longer you leave it, the harder it will be. I do hope you feel able to trust Sue and Jools and others on this forum as their advice is spot on.
I started to wean myself off Ropinirole when I reached the 2mg dose you are now taking. It took two goes, and each time I reduced more slowly. Go slowly and it’s definitely easier (although not easy!). The question is then what to do, as your dopamine receptors will likely have been damaged and I found Pregabalin, even at high doses of 300mg to 600mg did no more than take the edge off the symptoms. I spent over a year of hellish nights and desperate days, until I discovered this forum and began the quest for Buprenorphine. I’m now taking 2mg daily and my symptoms disappeared overnight. Get yourself off Ropinirole, following the advice from people like Sue and Jools, and then there will be help in finding a neurologist who’s up to date with the latest research. Stay strong and good luck with it. If I can do it (and I’m a complete wimp), so can you! x
Hi all thanks for information in had a reply from my Doctor today
"Thank you for your recent eConsult. We can switch to pregabalin if you would like. Please note Pregabalin can take up to 3 weeks to become fully effective. Common side effects: drowsiness, dizziness, unsteadiness
I agree with the weaning plan you have documented. I have prescribed pregabalin 75mg and 25mg capsules to allow you to gradually increase as you have written and also codeine (low dose opioid) and issued to nominated pharmacy.
If at any point you feel too drowsy, stop increasing the pregabalin.'
Im a bit confused and could do with a little understanding what and when to take. My plan was to reduce my Ropinirole by 0.25 every two weeks. But when do start the Pregabalin, is it the 1st day I start to reduce my Ropinirole which I was going to start tonight, and would that be 25mg. Sorry to be a pain but getting a face to face with my Doctors is impossible. And do I only take the codeine if and when I need it.
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