After ten years using a ritigotine patch the symptoms reappeared and were much worse. I read about augmentation and decided to slowly reduce the 2mgm dose by reducing the amount of time I was wearing it and switching to 1 mgm patches. Last December, 2024, I went to see my gp who didn't know what to do and got in touch with a neurologist who prescribed ropinirole tablets and after a couple of months I experienced increased symptoms again, with break through symptoms during the day when relaxing. The gp advised me to reduce the 2.5 mgm dose I was on by 0.50 mgms weekly. He also prescribed gabapentine which was eventually after several return visits increased to 900 mgms three times a day. As well as this he prescribed 15 mgm tablets of codeine three times a day. I have reduced the dose of ropinirole down to 0.75 mgms and each time I have reduced the dose, the last time by only 0.25 mgs the side effects have been horrendous, with thrashing legs, jerking, twitching and no sleep. I have experimented with the timing of the gabapentine and have found that a six hour ago between doses works best but of course that leaves a blank spot during the night. I have taken two of the codeine before bed and one in the early hours of the morning. I'm dreading the next time I reduced the dose. This time I'm leaving a two week gap between. Any advice on mitigating the withdrawal symptoms would be appreciated. I have not found my gp helpful with this.
Withdrawal from ropinerole. - Restless Legs Syn...
Withdrawal from ropinerole.
Welcome to the forum. You will find lots of help, support and understanding here.
I assume you are completely off the rotigotine patch now. If not I have other advice.
The gabapentin won't help you much until you are completely off ropinirole and you are taking it wrong anyway. It is prescribed 3 times/day because it is use for neuropathic pain. It is prescribed off label for RLS and we only need it at night.
This is my usual advice. 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. The codeine will help. 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 , the beginning dose is usually 300 mg gabapentin. Normally you would 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.
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 ."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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
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 ferritin and transferrin saturation (TSAT) numbers and reply back here with them. 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, 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 although it doesn't for all, 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.
Many thanks for your reply. I am completely off the rotigotine patch. I will take the gabapentin as advised by you, 300mgm four hours before bedtime and 600 mgm two hours before. I was given no guidance on dosing, simply told to take it three times a day. The guidance on ripinirole was to reduce it by 0.50 mgs weekly and this resulted in horrendous side effects. Following advice on your website, my last reduction has been by 0.25 mgs and I am due to reduce it again in Friday to 0.50 mgs. At present my symptoms are jumping, jerking or thrashing legs which start when I am relaxing or trying to sleep. Is there any way to tell if this is due to withdrawal, restless legs or periodic limb movement disorder until I am off the ripinirole? Is the treatment the same for both disorders? I was also given 15mgm codeine tablets to take three times a day. I have been taking two before bed and one in the early hours of the morning. Can you advise me. My iron levels have been checked and I am taking iron with the aim of increasing my ferritin level. My GP has no real idea of how to treat me and on asking advice from a specialist, whose name I do not know I was put on to ripinirole in December after coming off rotigotine with augmentation.
The symptoms are from the withdrawal. Wait until they subside before reducing further. It doesn't have to be at the 2 week mark. It may take until 2-1/2 weeks or longer.
The treatment for PLMD is the same as for RLS.
What is your ferritin? What iron tablets are you taking and how many mg?
Thanks for your prompt reply. A blood test on March 13 showed that my serum ferritin level was 17 ug/L don't really understand what this means but my gp prescribed one 200mg tablet of ferrous sulphate every other day because it makes me constipated. However, after reading your advice on ferritin I have started taking ferrograd C, purchased privately, every night, which contains 325mg mg of ferrous sulphate with vitamin C. I am having problems with constipation but I'm managing with laxative and plenty of fibre. Is the ferrograd C better than the tablets prescribed by my gp and when should I have the next blood test?
That is very low. You want it to be at least 100 and some say 200 or 300. I would ask for an iron infusion although many doctors in the UK won't prescribe one.
Since you are having constipation I would advise switching and take 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. And you can also take apo-lactoferrin which also helps its absorption.
Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion.
If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Since you are taking 2700 mg of gabapentin and following the logic above if you take more than 1800 you would take 600 mg 8 hours before bedtime and 100 mg 10 hours before bedtime and that would be ridiculous. Therefore you should switch to pregabalin. The equivalent dose would be 450 mg and you can take it all at one time 1 to 2 hours before bedtime and you don't need to worry about magnesium nor calcium.
Once you are off ropinirole and your symptoms have settled the pregabalin should control your RLS. If it does, reduce by .25 mg every 2 weeks until you get to the lowest dose that controls your symptoms.
If it controls it some but not enough you can increase it to 600 mg, but be sure you wait long enough to know this as you don't want to take more than you need.
If it doesn't control it at all and again wait long enough to know then you will need a low dose opioid. Reply back here and we can recommend the best one.
Can you tell us the name of the neurologist you saw? We need to make sure no one else sees that neurologist as their actions were criminally negligent.You do NOT switch a patient suffering augmentation onto another dopamine agonist.
In fact, a medical negligence lawyer wants to bring a test case against a UK doctor for exactly this sort of negligence.
Here is the lawyer's email. She will act on a no win/no fee basis.
Kimberley.Bradfield@switalskis.com
UK neurologists are not taught anything about RLS. There are only around 11 neurologists in the whole UK who know more than the basics.
RLSUK website has all the up to date advice and treatment. See below.
Look at 'useful resources'. There is an iron therapy page and a safe withdrawal schedule.
Show your GP.
Reduce Ropinirole by 0.25mg every 2 weeks.
Ask for a low dose opioid like 30mg codeine, 50mg tramadol or 10 mg oxycodone to take at each 0.25mg Ropinirole reduction.
You also need full panel iron blood tests as per iron therapy page and raise serum ferritin above 200ųg ideally.
900mg gabapentin 3 times a day is for nerve pain. For RLS it should be taken at night only in split 600mg doses 2 hours apart. Any dose over 600mg is a total waste as your body won't absorb it!
This is a HUGE problem in the UK. Complete lack of knowledge. GPs know even less than neurologists.
Hopefully your GP will read the RLSUK website and educate himself.
But PLEASE name the neurologist to stop other RLS patients using such an outdated doctor AND do take legal action.
And file a Yellow Card Report so doctors stop prescribing this poison
I'm sure this question regarding Gabapentine has been answered before.
Starting to withdraw from Ropinirole
Ropinerole, Augmentation, Withdrawal and Ferritin level of 8.
Dopamine to Pregabalin transition advice, please
