I have had non-painful but still highly disruptive RLS for 16 years. My only treatment has been ropinirole which has very slowly increased to 2.75mg per day taken an hour before I want to go to sleep. [I believe the maximum approved dosage for RLS is 4mg]. I still walk about every evening and my whole body just cannot relax, also a good sleep cannot be guaranteed every night, but I can just about put up with it. I tend to catch up on lost sleep every 5-7 days or so. I'm luckier than some but family and friends have to put up with my restlessness and I've started looking at this forum a bit more and am open to alternatives. It seems that nearly every post I read assumes that people are off ropinirole now, it's an old-fashioned drug with the added problem of augmentation (I can't tell if that's affecting me- if so, it probably started years ago!). Supply problems are still terrible and I have to mix whatever small dosages the local pharmacies can get hold of (worst case 11 x 0.25!).
Am I missing something? Has there been a major development which my GP has missed? Of course, it's not just a single GP in the UK these days, none of the doctors in my practice seem to have a clue about RLS! I have picked up that were I to transfer from ropinirole to something else, it would have to be an extremely gradual and lengthy process, so I wouldn't want to start down this road unless the consensus medical opinion was that 'x' is much better.
Is there an 'x' which is significantly better than ropinirole?
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christw
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You are already suffering from augmentation. 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.
The reason everyone wants to come off it is it will only get worse and can also lead to impulse control issues.
You are better to come off it now while it is not so bad.
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 (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) 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 is the consensus you are looking for 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, 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.
UK doctors and specialists have not been trained in RLS diagnosis and treatment, and the vast majority have not had the time or inclination to look beyond out-of-date NHS/NICE guidance.
NICE guidance was in fact updated to an extent at the beginning of this year to recognise problems with augmentation and impulse control disorders in dopamine agonist treatments (pramipexole, ropinirole and rotigotine) and to note that gabapentin and pregabalin prescribed off-licence were preferable in some circumstances. Many medics don't even seem to have noted this!
Sue has given you a lot of info and advice, including on how to come off ropinirole and on how to start gabapentin.
One thing she may or may not have mentioned is that if you've been on ropinirole for a long time gabapentin/pregabalin MAY not be effective. In that case, experts recommend low dose opioids, which many doctors and even specialists are ignorant of in an RLS context.
This latest piece by US RLS expert Dr Berkowski talks about DA's & gabapentin etc, but goes on to talk more about low dose opioids:
UK GPs have zero training or knowledge about RLS. They simply look up 'RLS' in their BNF & see Ropinirole/Pramipexole listed as medications.What they should be doing is ensuring your serum ferritin is above 200ųg/L and reviewing trigger medications. Even though this is a UK based group, this forum follows the Mayo Clinic Algorithm and the latest research and guidance from the American Academy of Sleep. The top experts are clear. Everyone taking dopamine agonists WILL experience augmentation. You are clearly experiencing it. I'll bet Ropinirole worked brilliantly for the first few years, but now you have severe RLS in the evenings and the RLS is more severe than when you started. Your GP will say that's the disease progression. It isn't. It's Ropinirole.
Read SueJohnson replies and get off it now. If you stay on it, the RLS will get worse and worse.
Withdrawal is hell for most patients .Arrange a friend or family member to stay with you for the 5 nights after you stop the last dose. Show your GP the withdrawal schedule on RLS-UK website and ask for help, particularly a low dose opioid to settle the withdrawals.
Read and research all you can. Start with RLS-UK website. Then watch Andy Berkowski videos on his website.
And to answer your question, many of us have switched from Ropinirole and have managed to find medicines to cover our symptoms. But it will be trial and error. We all respond differently to the next line treatments. SueJohnson takes gabapentin and it works brilliantly for her. Gabapentin and pregabalin and iron infusions didn't work for me, but low dose buprenorphine has worked. I take 0.4mg Buprenorphine, have zero RLS and sleep 8 hours a night. I can sit through cinema performances, long car journeys, flights etc. No RLS ever.
You normally start with gabapentin or pregabalin after a dopamine agonist, and if they work, you stay on them. If they don't, you can try a low dose opioid, but most GPs will probably need a specialist to confirm the prescription. There are not many neurologists who are knowledgeable about RLS, so let us know where you're based, and we can recommend someone.
Thanks all for your helpful replies. Will discuss with the wife (who suffers from my symptoms as much as I do!) but the change needs careful thought and preparation. We live in Epsom Surrey. I have already seen one 'sleep specialist' and done an online course with SleepStation (which was somewhat helpful). I think possibly that doctors aren't that bothered if, like me, you do not have actual pain - but that's not the point, is it?
Sadly, UK doctors do not know anything about the disease or the affect it has.As you're in Epsom, you can arrange to see Prof. Matthew Walker at QueenSq, UCL in London. His NHS waiting list is around 13 months, but you could see him privately for around £350.
He arranges iron infusions if your serum ferritin is low and he will prescribe low dose opioids to get you off Ropinirole.
Sleep hygiene is a total waste of time when you have severe RLS. Sleep and rest whenever and wherever you can during withdrawal.
You can start the slow process now. Tell your GP that you're suffering augmentation and need to reduce Ropinirole very, very slowly. If the GP asks why, direct them to RLS-UKwebsite and Dr Andy Berkowski website.
Also mention that hundreds of UK GPs have been successfully sued for failure to warn RLS patients about the very high rates of Impulse Control Disorder (ICD) on dopamine agonists.
Solicitors are currently reviewing whether doctors' failure to expressly warn patients about the inevitable 'augmentation' is also actionable for negligence.
Hi, I too have done the sleep starion program and while it helped develop some good habits to get some good sleep, they do state that you should consult (I laughed here) with your GP as their program cannot really address the lack of sleep due to RLS. I was on pramipexole, same family of drugs, and developed augmentation. It creeps up on you so it just seems like progression of the RLS but is in fact the drug now causing the worsening symptoms. There are other side effects I believe including impulse control disorder where people become shopaholics, gambling addictions, amongst others. Finally, I know pramipexole has been found to cause sudden onset sleep that has led to serious car accidents. I have recently weaned off pramipexole and although still figuring out dosage tolerances on saloxone, the difference in my mental acxuity etc is huge. I did not realise the mental fog I was living with jntil I emerged from out of the incidious affects of pramipexole. I personally, seemed to have a reasonably easy time weaning off pramipexole. I went slow and steady, waited between dose change for things to settle out before making another decrease. Pramipexole is a hell drug that ensnares us in its clutches and quite honestly, is as bad to be on as rls, especially as it ends up making the rls worse. Good luck and seriously, I would not go back to pramipexole ever or ropinirole for the havoc it has caused to me.
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