I’ve been on 3.5 milligrams of Ropinirole for about 4 years now but my RLS is getting much worse- legs and arms. Even though I take it throughout the day and am very active I cannot sit down and take a rest without the RLS kicking in. I am fortunately getting some sleep. Should I switch to pregabalin? Is that a better medication?
TIA.
You are suffering from augmentation and need to get off ropinirole. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 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 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. 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 of gabapentin or pregabalin 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 take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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...
Thank you so much for your comprehensive reply. I dread coming off ropinirole but had thought that this is what would be necessary. I am very concerned that my GP will not be well informed about RLS so your information is invaluable. Many thanks again.
I'm having Ropinerol augmentation also and desperate to find a doc to do an iron infusion. In the past it's the only thing that truly helped. My ferritin is always about 12-15 (normal range is 6-137). I have been on Ropinerol for many years, and like you, get periodic augmentation from it so I do a purge from it to reset the cycle. I do large doses of gabapentin for a 3-4 weeks then go back on Ropinerol. Gaba doesn't work very well but at least it's something....
What is your ferritin etc? If it's low maybe the iron infusion would be a good match for you.... If you can get your doc to listen to the research.
I had my iron levels checked a couple of years ago but no mention was made of ferritin which makes me wonder if they checked that. This is why I need all the information I can get when I do see the Doctor as I’m unsure how well informed they are about restless legs and arms. Still waiting for an appointment.
Hi Sue
I've now visited the Doctor who was very sympathetic and agreed that he would not put anyone on ropinerole and also agreed with you that I should wean myself off it so I have, as you suggested, dropped half a tablet 10 days ago and will drop the next half tablet on Friday. He also agreed with you that pregabalin would be a better medication. The Doctor has prescribed codeine to help with the withdrawal. I had blood tests yesterday and have now seen the results online. No Dr.'s appointment until the 24th. The results say my serum ferritin is 21 ug/L and states the normal range is 28-200 so it certainly looks as though that needs attending to. I cannot find, amongst the plethora of results listed, anything relating to transferrin saturation. Would this come under another term? My Doctor did admit when I saw him that he is not terribly well informed and that I appeared to be more knowledgeable than him which, of course, is thanks to you and this forum and another couple of websites that I have visited. He did tell me that I would not get an iron infusion unless I was very anaemic.
Most doctors wouldn't admit that you might know more than them, so that is good. Transferrin saturation is often listed as TSAT or iron saturation or iron binding capacity. Well the good thing about your ferritin being so low, is there is a chance that improving it will help your RLS. take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that 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. Ferrous sulfate for most people does not cause constipation but iron biglycinate is much less likely to. If you take magnesium or calcium including in a multivitamin take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Thanks Sue, sorry I haven't replied before. No I still cannot find anything that relates to transferrin saturation amongst the results so will need to leave that until I speak to the Doc. on the 24th. I will inform him of your information of what I should take to improve the ferritin level. You inquired about the medications that I am on. I have been on bisoprolol since January 2012 and a blood thinner for some years also. I was put on atorvastatin in April 2017 and then needed, a few months later, help with RLS subsequently being prescribed ropinirole in October 2017. So it would appear that the statins could be part of the cause of my RLS. I will also mention this to the Doc. when I speak to him. Once again many thanks for your help.
Both bisoprolol which is a beta blocker and atorvastatin and most blood thinners make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way. As far as a blood thinner, there is dipyridamole which has actually been used as a treatment for RLS. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib... You don't need to wait to see your doctor before starting to take iron for your ferritin level as it is OTC . And since it is so low you can take it every day at least 24 hours apart.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, playing and listening to music, meditation, creative hobbies 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 came off of ropinrole about 6/7 weeks ago, it is not easy but such a relief to finally stop the "madness". I didn't take as large a dose as you, only 1 1/2 pills a day for maybe two years. I didn't have any help to get thru it but did do it very slowly. The last 2/3 weeks without any ropinrole was pretty bad but doable. I did start taking gabapentin a few weeks before stopping but like Sue mentioined, you won't find it helps til you are off it. I did see a neurologist I found off RL organization and he has been very helpful.
This might help explain what augmentation is and why you get it from dopamine drugs.
rls.org/treatment/managing-...
I guess I was unusual. When I weaned myself off ropinirole due to augmentation my RLS slowly retreated back to being only in the evenings and nights. It was such a relief after having it 24 hrs a day from augmentation. So I can’t say I really had any withdrawal symptoms. I did a lot of night walking as I wasn’t taking anything to fight the RLS while weaning off. But I got through it. There is another bad side effect to ropinirole and that is a personality/compulsive disorder and change that can effect some people. I didn’t realize I had a shopping disorder until I was off the ropinirole and felt like my responsible self again. This is a dangerous drug! One man on a different RLS website attributes ropinirole to a gambling disorder that lost him his house and family. He realized after coming off the drug he could once again control his impulses.
Don’t think that a neurologist is a better choice for a doctor. I’ve gone through two of them and one specialized in motion disorders. One kept telling me that the reason my RLS was getting worse was because the longer you have restless legs it always gets worse. He just kept increasing my dose of ropinirole. Not true! Neither one of these doctors knew anything about augmentation.
I can’t really help you with alternative mainstream meds as I have tried them all and had various side effects I couldn’t live with. I now control, successfully, my RLS with CBD/THC. Good luck!
I was on Ropinerole for a few years with limited results, plus it made me really nauseous and I was constantly worried about augmentation. The Dr. I'm going to now tried me on a low dose of Methadone (5mg/day). It's been about 4-5 months with no episodes and no side effects and I'm sleeping well. Literally saved me from suicide.
Yes al these replies look familiar. I couldn't sit still between 16:00 & 22:00 when I went to bed. Now I am off it & on Targinact which helped but not a solution really to the RLS. Sleeping is my biggest issue now.
Hello milly -22. I was originally on 6mg of Ropinirole as suffered RLS for over 40 years not that I’ve be taking that medication for that long but long enough for it to become a problem so was advised by RLS-UK to withdraw from it and I started on 26th October 2022 and reduced to 4.5mg / day and due to reduce again by another 0.25mg at end of this week. I wouldn’t be telling the truth if I said it’s easy, it isn’t and have wanted to throw in the towel many times but with the fantastic support of people on this forum I am determined to clear my body of Ropinirole. It will take me a long time but would definitely encourage you to do the same. The first week or so of each 0.25mg reduction is unpleasant but with each time when your body acclimatises to the reduction you feel better, well I do and that’s what makes it worth while. I don’t know if it’s linked but I’ve lost 30lbs in weight without dieting, so another 30lbs and I’m back to my fighting weight, no, I’m no fighter. So Milly you can do it as we all know ladies have much more willpower than us men. Take care and best wishes. 🙏
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