I am trying to come off Ropinirole. I have gradually reduced my dosage from 2.5mg to a half mg. I’m not getting much sleep and am unable to sit from midday onwards without the rls being a problem. My GP is not very helpful and is unlikely to prescribe an opioid to help this final stage. She has prescribed Gabapentin and I currently take a dose of 200mg at night. I note from the forum that they are unlikely to start to help until I’ve stopped the Ropinirole altogether. However, I have some 15/500 Co-codemol tablets from a previous prescription (given after a hip operation) and wish to know if there might be some benefit in taking those for a short while to help me get through this final stage of stopping the Ropinirole. If it might help, how many should I take and what time of day?
Use of Co-codamol when coming off Rop... - Restless Legs Syn...
Use of Co-codamol when coming off Ropinirol?
Take what you need to ease the pain.
But keep in mind how much you have,/ will need to get through this period.
Otherwise you will end up worse off.
Good luck.
Why do I need to stop taking Ropinerole? It has been a wonder drug for me with my RLS. Is it dangerous?
Welcome to the forum. You will find lots of help, support and understanding here.
It is a dopamine agonist like pramipexole and Neupro. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin and pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And some expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
Also check out the recently revised NICE guidelines which also discusses augmentation and that it is no longer recommended.
I strongly advice you to come off it before this happens as it will be a lot easier.
Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch 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 them but they are not uptodate on the current treatment recommendations.
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 if needed.
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). (Pregabalin is more expensive than gabapentin in the US.) 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, estrogen without progesterone and sometimes even with it, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.
It should help. Take it an hour before symptoms start. You can take up to 6 in 24 hours.
If you are having trouble reducing and suffering a lot you can go back up .625 mg and then 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.
Are you in the UK?If so, NICE cks guidance changed overnight in February to relegate all dopamine agonists. And treatment now recommended is gabapentin/pregabalin and opioids if they don't help.
So show it to the GP. Also show her the RLS-UK withdrawal schedule where it is made clear how hellish withdrawal is AND that most people will need an opioid to get through this tough time. Ideally take opioids for 4 or 5 nights after each dose reduction.
If your GP refuses, then co codamol is the best you can get in the UK. Take every 4 hours to get through the most difficult nights.
Increase gabapentin now to 900mg. Take 600mg 2 hours before bed and 300mg 4 hours before bed. It won't help much until around 4 weeks after the last 0.25mg of Ropinirole.
cks.nice.org.uk/topics/rest...
And ensure you get morning, fasting full irogegen panel blood tests as you need to raise serum ferritin above 200ųg ideally. It will help reduce some of the withdrawal symptoms.
Take 2 to 3 weeks off work/social occasions after the last dose of Ropinirole. You will get no sleep/rest for 4 or 5 days and severe, all over RLS and violent leg jerks. Ask a family member to stay up with you for a few nights as falls from exhaustion are common.
Good luck. You are nearly there.
PS- cannabis really helps at this stage.
Thanks for all the speedy replies. I am in the Uk and I have been on an iron supplement for a few months. It has increased my serum ferritin to nearly 100 so far and will, hopefully, increase it further. I’m not looking forward to the next few weeks/months as I try to come off Ropinirole altogether but this forum is a great help and I’ll let you know how I get on.
My gps haven’t addressed this yet- oh what fun lies ahead replacing the ropinirole- Gabapentin made carpal tunnel reappear or start initially so it’ll be back pregalin with higher opiates monitored until switched over fully. Great lol
However on reading & learning- think maybe I developed less impulse control trying to see how li g it’s been prescribed- less than a year but know doses went up quickly as I found then with less thrashing about at night helped reduce daily opiate amounts… hate the things & want back off them again.
Please keep us posted with how you are getting along. Xx
I did the Jon Hopkins protocol which was coming off 3 mg ropinirol in three weeks and then no drug at all for two weeks to clear the system.
It was brutal from a mental health standpoint and showed me how dependent I’d become. But when I was finally off and took no other drugs for two weeks , I realized just how much ropinirol made my symptoms way worse.
So that two weeks while, it was hard, the RLS symptoms were nowhere near as bad while I was on ropinirol after eight years.
I did take gabapentin for the last week that I was widthdrawing but stopped before the two week cleansing period. It had very little effect on the severity of the withdrawal though.
Coming off the drugs
Use of Co-codomol
Wean off of Ropinirole?
Weaning off ropinirol 
