So as I start to wean off of the Ropinarole my biggest fear is that I will be unable to work. Once augmentation took hold I am unable to curl up on the couch, relax or nap during the day without the RLS forcing me to my feet; that's while on Ropinarole. How did those of you who work, and also have daytime RLS manage while getting off of it without having to pace all day and night for months. I know that is going to make me feel like I'm losing my mind and unable to do my job, which is unacceptable. So I'm looking for advice and tips on how those who have gone through the withdrawl and had daytime and nighttime RLS kept their sanity and were able to function with life in general?
Anyone experience daytime RLS? - Restless Legs Syn...
Anyone experience daytime RLS?
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At this point in your experience, there is virtually only one option.
That is to seek opioids for relief of symptoms.
You don't say where you are living. But it may have a bearing on how easy or otherwise it will be to get.
Good luck.
Sorry I wasnt sure how to ask a new question after my initial post yesterday. My doctor just told me to wean off and all she gave me was Trazodone for nighttime and had no answer for how I was to manage the daytime issues. I am currently looking for a new doctor in the USA but that will take months to get an appointment on top of being on Medicare which limits who I can actually see. It could literally take me months to find a doctor who will work with me on this and I want to get off ASAP. She did prescripbe Pregabalin 25 mg 1 X a day ONCE I am completely off of the Ropinarole. She said she can't give me anything to help me while getting off of the Ropinarole.
What city and state do you live in? I may be able to give you the name of a doctor.
Colorado Springs, Colorado
I second that. I've been on opioids at night for almost 30 years and am still on the same dose I started with. If I'm going on a car journey, or train during the day - whenever it means sitting still, I take one dose before I start out and I'm fine.
Same here. I would have gone batpoop crazy if not for Vicodin the last ten years. My RLS started with a couple of hours in the early evening. Then progressed to 24/7. I feel fortunate to have found a pain management specialist who understands the disease. My dose hasn't changed either, proving that for many, it's not an addictive drug. Opioids might not work for everyone, but they're most certainly worth trying.
It's not addictive at most RLS doses... this country has gotten so crazy about opiods.
Did you know pregabalin is schedule 5 controlled substance? My doctor clearly thinks it's ridiculous.
May I ask what the dosage is and which opioid you are taking. I was on oxy for a while and became allergic to it then went on hydrocodone and it worked but I habe Now been switched back to ropinirole.
Are you aware that up to 70% of people will eventually suffer augmentation on ropinirole 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 or pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
On the gabapentin or pregabalin, 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 (pramipexole) 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 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 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? 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.
Meanwhile 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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, 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.
Thank you. I’m well aware of everything in your response as I’ve been dealing with this for over 20 years and I’ve tried it all. Right now I have an excellent doctor, one of the most knowledgeable RLS docs in the country (US). The one thing I wanted to know was the dosage amount on the opioids, for comparison sake. I’m sorry I must have responded to the wrong posting.
I can take 10/325 Hydrocodone/Acetaminophen anywhere from 4-6 times a day. I have days, when I'm sufficiently active and on my feet, that I only take 2 or three, and that's in the evening and night. That dose grants me a solid 4 hours of sleep, but I've also sometimes slept for 7 or 8 hours. It just depends on how bad the RLS is. I always try to take the minimum necessary, because of the possibility of kidney issues.
You should be able to still work if you follow the advice I gave you yesterday - upping your dose first to stop the bad symptoms and then using a jewelry scale to reduce by a small amount. I know you want to get off as fast as you can but taking it very slow will let you work. Did you ask your current doctor to prescribe an opioid preferably buprenorphine. Show him/her the section of the Mayo Clinic algorithm on opioids if s/he is reluctant. S/he can't very well argue with the Mayo Clinic as doctors in the UK sometimes do.
How much ropinirole are you on and is it ropinirole ER?
I’m on 2 Ropinarole currently. I take one half at 2 PM and one and a half at 7:30 PM. As I mentioned before, my doctor is not any help at all I have an appointment to see a neurologist, but I can’t get in until May of this year. It takes me at least two months to get an appointment each time to see my doctor and she just told me that I would have to deal with the daytime issues and gave me a sleeping pill for nighttime. If I could change doctors which I will, it would be months before I could get to this point again as our system, here is extremely slow and the insurance requires them to follow multiple steps before they can do anything with a new patient.I’m in the US in Colorado Springs, Colorado. Medicare limits me from choice of doctors who are in my plan. My only other option that I have looked into is going to an alternative doctor and paying out of pocket instead of through my insurance. Our insurance here dictates doctors go through a specific plan of treatment before they can try anything outside of that guideline so it can take a year before you can actually get a doctor to try something such as opioids.
You must be on a Medicare Advantage Plan which limits you to their network rather that straight Medicare which would allow you to see almost any doctor. (I am on Medicare and I don't have to wait to see a doctor). If so I know you can't switch back to regular Medicare until next Fall, but I would advise you to do so then.
The best doctor is Jeffrey S. Durmer, MD, PhD - Chief Medical Officer at Nox Health, Denver, CO - board-certified in Neurology. He is on the medical advisory board of the RLS Foundation. (404) 771-2547
I have the names of two doctors near Denver that were recommended on the RLS Foundation website. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable. They still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.
Rajeev Kumar (303) 357-5455 Englewood
Marc Wasserman (303) 265-3390 Littleton
Although all 3 doctors are near Denver they might offer telehealth visits after the first in person visit. If your plan accepts them you might want to message Climber54 who I also recommended them to, to see what his experience was. And if you do see one of them, please reply back here what your experience was so I will know in case anyone else wants names in Colorado in the future.
Wow, your doctor is not a very nice person. I am so sorry. No doctor should just leave you to suffer for so long.
Oxycontin is considered an appropriate part of RLS treatment. Or maybe it's oxycodone. Anyway, it is in a standard of care.
This link includes info from Mayo, Massachusetts General etc which may help to convince your doctor to give you a low dose opioid:
yes just as painful
I also had RLS 24/7 on Ropinrol. I think I was an exception, as I didn’t go through withdrawal. As I weaned off, I only felt relief as every day got better. Slowly the daytime RLS disappeared and returned to only being in the evenings and nights. Dr gave me Clonazepam at night to get through the weaning off. I also took CBD. After trying other medications which all had side effects for me I started taking only CBD to control my RLS. Works most of the time. I am allergic to opioids.
I’ve taken CBD in the past so I may try that again. My problem is I live in US in Colorado and am on Medicare which limits who I can see and my current doctor isn’t helping at all, she’s the one who put me on raw in the first place, which I think should be illegal! Then she told me to just wean myself off without any assistance and then I could get on something after I was completely completely off. In tears I told her I didn’t know how I could do it because of the daytime issues and she said that was my only option. that’s why I’m here for other options on how to do this. I do have a an appointment with the neurologist, but it took six months to get into so my appointment isn’t until May 2024 Owner
Is kratom legal in Colorado? It's an Asian herb and acts like an opioid. It can really reduce withdrawal symptoms while you get off Ropinirole by 0.25mg every 3 weeks. Use it to get yourself down to zero Ropinirole and then hopefully you will see a doctor who can get your serum ferritin above 200 via pills/infusions and prescribe pregabalin or gabapentin for ongoing treatment.
Yes, kratom is legal in Colorado and there are kratom bars and shops. I am only personally familiar with the one in Grand Junction but I am sure there are some on the Front Range. Buying in person is much safer than buying online. And yes, this would be my recommendation if unable to get a script for opioids. Kratom kept me alive until I got on buprenorphine. I wouldn't recommend it long-term however.
Agreed. It's an emergency situation where the patient has to get off Ropinirole, but her doctors can't help until she sees a knowledgeable doctor.
So I had never heard of Kratom but looked into it and it seems like a good option. My question is how much do you take. I read if you take too little it can make you hyper which I don't want to do.
I used to take a level teaspoon of red vein borneo during Ropinirole withdrawal. I mixed it with orange juice to disguise the foul taste.
Mitragaia.com is an honest website that I have used myself - I am not at all affiliated with it. If you buy by the kilogram it can be as cheap as 8 or 10 cents per gram. Of course, read up on kratom first to help you decide whether to use it and how much to take. I used it for a year or so until I could find a doctor who was brave and knowledgeable enough to prescribe me low-dose (10mg/day) methadone.
Unfortunately, one can build up a tolerance to kratom, so it is not a long-term solution, but it got me through for a good while. Feel free to ask if you have further questions. I had to go out of state to see Dr. Mark Buchfuhrer (Google him) in Downey, CA, but perhaps you can find someone closer. Sleep doctors might be your best bet to find a doctor who knows how to treat RLS with low-dose opioids.
Up until recently, my RLS symptoms have always been worse during the day. As a teacher, this has been difficult, and I often had to make excuses to get up and write something on the whiteboard just to get some relief. Now that I'm working part-time it's easier, but often I find that I can't sit down to read or just relax when I'm at home, which is distressing. My only solution is to get up and do something distracting, like cooking or cleaning or going for a walk. Usually just 10 or 15 minutes will be enough to give me relief for an hour or more. I'm not on any medications, other than an iron supplement.
Why are you suffering when medicine could solve it, especially when you've never been on a dopamine agonist. Don't you want to be able to sit down and read and relax?
Thanks for your reply, but I'm afraid that what I read on this site makes me want to avoid medicines. This may change if I get truly desperate. I have researched the French names for the main drugs. I think my doctor will probably be sympathetic, but he doesn't know anything about RLS and is unlikely to refer to any documentation in English. There is a JSR (jambes sans répose) forum which should have some useful advice for FR sufferers. I haven't checked it out for a while, but will do so.
The dopamine agonists pramipexole and ropinirole definitely should be avoided, If you are talking about gabapentin or pregabalin side effects, you can always stop taking them if the side effects are too much by slowly weaning off them and you will have no withdrawal effects. I doubt you would need opioids since you never took DAs and your RLS is not severe. So nothing ventured, nothing gained on gabapentin and pregabalin but of course that is your choice.
Thanks Sue. I wouldn't say my RLS is not severe though. Last night, for example, I got about 1 hour's sleep, after getting up 5 or 6 times and pacing the floor. I have to stand up to watch tv in the evenings, or lie down, though often that doesn't help. Doing anything creative in the evening is not usually possible, unless it can be done standing up or lying down. I can no longer go out in the evenings with friends for a meal, cinema or other event, and I get RLS in the day as well. I'm not sure how much worse it would have to get to be severe - not that it's a competition 😉! If I could just take a tablet on and off when things get unbearable, I'd do it - it's the thought of being permanently on medication that I don't like, plus the side-effects. I do appreciate your advice though, and the help you, Jools, Madlegs, and others give to everyone here. I'm storing it up for a time when I really can't manage it any more.
Ouch. Yes that is certainly getting toward the severe side. Side effects from medicine if any would be a lot less than what you are suffering now.
I know you are on an iron supplement but what is your ferritin which would tell us whether an iron infusion as Joolsg suggests would help?
Sorry to reply so late. The last blood test (March 2022) put the ferritin at 46.4 ng/ml. I'm about to get another full iron panel done to see if the supplements I've been taking have increased it any. My doctor is very unhappy about me taking iron supplements, because my mother had haemachromatosis (discovered only as she was at the end of her life). I think he'd really baulk at an iron transfusion, but I'll see what the blood results are.
As long as your TSAT is below 45 your doctor does not need to worry about hemochromatosis especially if you get regular full panel iron tests which give your TSAT. You can get a 23 and Me test for the genes for it for around $200 in the US and they do ship to France although you would have to add on the shipping.
An iron infusion would very likely resolve your RLS. As you have been med free, it is more likely to work. You can arrange a private iron infusion of Injectafer either in france, or here in the UK.
Thanks Jools. I'm not British, so it would definitely be in France, but I'll check it out.
If you can't get one in France, there are private Iron Clinics here. A weekend trip to London?The Iron Clinic in Harley Street arranges infusions if you send your blood results. Cost is around £800.
As an acute sufferer my self having RLS around most of the day, I asked my doctor to consider an Iron Infusion as my Iron levels were very low. To my astonishment I felt so much more relaxed afterwards and the symptoms had almost gone although I did take smaller doseages of ropinorole but like you, I had gone through Augmentation and literally was pulling my hair out.
After many many happy years of being on Ropinirole, like you, I suddenly got augmentation, AND daytime RLS. It drove me absolutely mad.
It was only through this Group that I learnt about augmentation, and moved over from Ropinirole to firstly Gabapentin, then Pregabalin, and finally 150mg Pregabalin and 10mg Longtec (opioid). This final combination works on my night time RLS quite well.
But pretty much as soon as I came off the Ropinirole, my daytime RLS stopped - it really was the produce of the augmentation. And I don't get it now (unless I have a long plane journey!).
So have faith ... and don't just come off of Ropinirole onto nothing. Firstly try Pregabalin (max 450mg daily) and if that does not work, I can recommend a combination of 150mg Pregabalin and 10mg Longtec (opioid) (Oxycodone).
Good luck and hope this helps.
I had to wean off Pramipexole. I didn’t get withdrawal as bad as some do but it was very tough. I was taking codeine as well, so that possibly helped. I’m self employed so just got through as best I could. I did lose money having to postpone or cancel some bookings. I went onto Pregabalin as soon as I was able. sorry I can’t tell you of a miracle pathway through withdrawal.
If you have RLS during the day it's probably down to what you have for breakfast. The common cause is a breakfast of cereal, toast and fruit juice all of which will raise your blood sugar levels and cause inflammation which will lead to RLS. On top of breakfast if you have a biscuit or piece of cake with your mid morning cupa that will spike our blood sugar and cause more inflammation. Then a high carb lunch of sandwiches or chips or sweet dessert after lunch will cauese even more inflammation. This is why people mostly have rls in the evenings after a trickle of inflammatory foods throuought the day while overnight they are not eating therefore the inflammation dies down so thet they may be free of rls until the next meal of inflammatory foods. Try a breakfast of bacon and eggs or a kipper or anything high in protein and fat and low in carbs. You may find that you do not need a mid morning snack as blood sugar causes more release of hunger hormone therefore with lower blood sugar your hunger pangs ill be weaker.
I would add to this that you should start every meal with fibre (greens, veggies), then go on to proteins and fats and finally (if you want) sugars. This is the recommended approach by Jessie Inchauspé in The Glucose Revolution. I have only just started this practice, so early days, but am already seeing a marked improvement in my RLS, sleep, and overall energy.
I started a low carb eating plan a month ago and it hasn’t changed any of my daytime flareups.
It is not just low carb but you must eliminate all causes of inflammation
I don't think there's much wrong with carbs as such. The idea is to reduce inflammation, as Eryl says. One way to do this seems to be to even out sugar spikes throughout the day, by eating foods in the right order. (This is all a bit new to me, but I'm giving it a go and it does seem to be having a good effect.)
Yes, recent research shows that if you eat the fatty food first and the carbs last you will reduce blood sugar spikes. That's why sweet foods have traditionally been eaten for dessert but the food industry has skewed it the other way because high blood sugar affects you hormones and makes you hungrier.
As others have mentioned, my daytime RLS stopped quickly as I reduced ropinirole. If you're open to it, consider trying cannabis for sleep at night. If you can't get that, do a search for Delta 8, a combination of THC and CBD. It is legal in many states where marijuana is not. You can buy it at CBD retail stores. As with any drug, there certain drawbacks, but none as bad as going through life without sleep.
I am 5 weeks into weaning myself off of Neupro. This week I am down to a third of a 2mg patch. About .66. With the help of first a 10mg patch of Buprenorphine p and, as I cut back more, a 20 mg patch, I have been doing well. Some burning but not as bad as the augmentation. This experience is quite different from my previous attempt to quit cold turkey. That was pretty horrible. Best of luck. With the advice to the knowledgable people here you will make it.
Can you buy weak codeine over the counter in the US? it’s not much help but maybe a little?
Not that I know of.
You can get them in the UK. Try the pharmacy, it might help a little.
No except there is some in some cough syrups but probably not enough to help.
No. It's a controlled substance in the US.
Bummer ☹️. You can get 8 mg with paracetamol, it’s a controlled drug but you’re allowed some slightly superior relief in your pain is unbearable. I’m sorry the US situation is what it is.
The US is not really big on patient comfort, unfortunately. Unless you are rich. Money always makes the way, if you have it.
Weaning off of Neupro, I went very slowly, 1/4 patch at a time at the very end. Meanwhile I had 1800 mg gabapentin, prescribed by my neurologist. I also had a low dose of hydrocodone, but I don’t think that did much. My neurologist had never heard of cutting the Neupro patches, but said I should try. He retired and now, fortunately, Dr. John Winkelman from Mass General in Boston, now has taken over managing my RLS. I’m in Maine, and have had a telehealth visit with him and once drove to Boston. It’s worth the five plus hour trip.
As Sue suggested, switch to original Medicare as soon as you can. You can go to whom you want and aren’t stuck in the network. I’m presently on 400 mg Pregabalin at7 p.m. plus 300 gm of gabapentin before bed. I still have breakthrough symptoms, but manageable. I’ve had multiple iron infusions and can feel when I need one, and sure enough the ferritin levels will have dipped down again below 100.
Yeah, coming off Neupro was tough, every time I decreased was usually a sleepless night. I’m certified for medical cannabis, and that was key for me to get through the nights, still helps at night if needed. But 25 mg of Pregabalin won’t do much, at least not in my book. Getting through the workday might be better than you think. If you have to sit, ask if you can have a higher desk, or stand up if possible. Or consider you might have to miss some work, or perhaps have a shortened work day or start later, leave earlier or take frequent mini breaks. Perhaps something can be worked out. Think outside the box.
Don’t be afraid of being too assertive to get the healthcare needed. Be the “squeaky wheel”. You deserve to have the help you need. At one point I felt like going to a doctor and sitting there until I was seen.
You have to be careful with being too squeaky. Doctors, especially specialists, are very quick to send you on your way. A person's need is often inversely related to the number and quality of doctors willing to help.
Healthcare in the US is a very big mess. Doctors are overworked due to corporatized Healthcare and the maze of insurance. They have also put themselves into tiny cubicles of knowledge, so it's easy for them to dismiss people. Finding a decent specialist for movement disorders is simply not possible in the city I'm in. They all want Parkinsons. It's much Sexier than RLS, which really needs to be called Willis-Ekbom Disease.
Hi, My symptoms have become much worse as I age, and that's the way it goes apparently. (I'm 81 and have had RLS for over 40 years.) I've had daytime symptoms for a few years, and now they often wake me up in the early morning. It's dreadful. I have attacks or bouts of RLS at least 4-5 x per day. I can't imagine being like this and trying to hold down a job. I used to teach, and at least you can walk around, if necessary, but that's little comfort.
I am on Pramipexole .25mg x2 per day, BUT I also take Codeine 30mg x4 per day. The codeine is essential. I used to be able to make do with an occasionall Tylenol 1, which has a small amount of codeine. In Canada, you can buy them over the counter, but I noticed travelling in the U.S. they require a prescription. Doctors are more and more being pressured to not overprescribeopioidss, so it's essential that your doctor understands RLS.
I am fortunate that my family doctor is understanding, and I not only have a neurosurgeon/sleep specialist to help (I'm on C-PAP.) but my spouse is a retired GP. So, my support systems is excellent. However, even with the Pramipexole (which I'd love to get off ) and the Codeine 30s, I sometimes have to add either a Gabapentin or Tramacet. Being overtired or overbusy aggravates the RLS, as you know. I had a horrible December because I overdid the Christmas preparations, and the legs settled down unbelievably almost right after Dec. 25!
I hate being roused from sleep by the morning bouts. I've also noticed sometimes just a touch will set them off. Pedicures became torture. I never had them often to begin with, but I don't have them at all now. Having a wound on my leg dressed daily lately was awful. As soon as the leg was touched, the RLS began. If I go swimming, as soon as I'm in the water, they'll start up but will go away before long. I could go on and on, and I guess I have, but my point is you need opioids, and you must find someone who understands that, ASAP! Best of luck. I sympathize with you and so many other fellow sufferers
Wendy, I couldn't help but respond. You have severe RLS becuase of the pramipexole you're taking. The daytime RLS and the 4 to 5 severe bouts daily are clear signs pramipexole has turned on you. If you get off it, the codeine alone will help.
Please read ALL Suejohnsons replies and follow the reduction protocol. Reduce by half a 0.088 pill every 2 weeks. Start pregabalin or gabapentin ( if not contraindicated) about 4 weeks before the last dose of pramipexole. The codeine will help settle withdrawal symptoms.
Ensure you get full panel iron blood tests and raise serum ferritin above 200 via pills/iron infusions. You don't want to spend your last decades suffering severe RLS, so deal with it now.
Dear Jools, I can't thank you enough for your reply and the valuable advice. Our issue has been with how to get off Pramipexole. I have tried replacing it before with the Neupro patch and with Gabapentin, both of which had side effects. One thing we did wrong, I guess, was starting the Gaba too soon and at too high a dose. I became a zombie. I am going to share both your advice and Sue Johnson's with my specialist in two weeks. I will let you know what happens, but I feel better prepared to suggest how to do things now. Thank you again for taking the time to reply. It means a lot to me.
Do NOT agree to the Neupro patch. It is another dopamine agonist and you WILL quickly suffer augmentation again. Some UK neurologists seem to believe the Neupro patch is less likely to cause augmentation. But from experience on this website and from the experts in the USA, it's clear that they are wrong.RLS UK website has all the information you need about gabapentin, the dose and timings.
But, SueJohnson replies set it all out. You reduce Pramipexole VERY, VERY slowly. Half a 0.088 pill every 2 weeks. RLS increases in severity with each drop. That's normal. Ask GP for codeine or tramadol to settle the withdrawals.
4 weeks before the last dose of Pramipexole, start gabapentin OR pregabalin. At night only.
Start slowly. You WILL experience side effects of dizziness etc, but they all reduce over 3 months.
And of course, the FIRST step is to raise serum ferritin above 200ųg/L by iron pills or iron infusions. So ask for full iron panel, fasting, morning blood tests.
Yes to this! Earlier and earlier symptom onset is a definition of DA augmentation. There is no way around it.
The studies for the DAs were stopped before they observed augmentation because they were so excited about hoe well it worked.
Getting off DAs literally damaged my brain. Four years later and this bibliophile can hardly read a book and comprehend its finer points at the same time. I used to read over 100 books a year. I read maybe 5 complete books anymore. The rest is pouring over studies about medical stuff. I don't think I can realistically fully trust Doctors anymore. Study. Verify.
Likewise. My trust in GPs and neurologists has completely gone.
Joolsg is right. Having daytime symptoms and having your symptoms get worse are classic signs of augmentation and you are taking the maximum recommended amount at .5 mg/day. So you need to come off it. Pramipexole (and Ropinirole) and are no longer the first-line treatment for RLS, gabapentin or pregabalin is. 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.
To come off pramipexole since you are suffering so badly I would suggest you first increase it by .125 mg. You can cut a .25 tablet in half to get that. Wait a few days for your symptoms to settle and then reduce by .125 mg every 2 weeks or so. I would start with the daytime one. 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 stronger low dose opioid than codeine temporarily although the tramacet might work 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, beginning dose is usually 300 mg gabapentin (75 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 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 don't take it within 2 hours for the same reason (not sure about pregabalin).
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...
You've said you have had iron infusions. Have you had your ferritin tested recently and if so what was it?
Meanwhile 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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, 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.
Dear Sue, As with Jools, I am deeply appreciated of your taking the time to not only respond but to give me such detailed suggestions for weaning off Pramipexole. I have tried in the past, using the Neupro patch , which gave me other side effects (primarily swelling), and using Gabapentin. However, we introduced too much Gaba too soon, and I became a zombie. Now, thanks to you and Jools, I have a better idea how to do it and will present your ideas to my specialist when we have our Zoom consultation in about ten days.
Years ago, I was on a higher dose of Pramipexole without the codeine, and I got into augmentation. My specialist at the time was one of the best, but this was the mid-1990s and that drug was the suggested one at the time. He then diagnosed the augmentation and changed my dose and routine. I have been off caffeine and alcohol for years but am considering eliminating sugar. and perhaps going gluten-free. I do have support stockings for ideopathic edema and I believe they do help with the RLS as well.
As for some of the compulsive behaviousr that can be caused by Pramipexole, I am positive compulsive eating is one I suffer from. That could also be a result of the pain and stress, especially at night. I also have mild-to-moderate Tourette's with some OCD, so it's quite a mixture! I don't take any meds for the Tourette's except a very occasional Ativan, like one every two weeks or more. I am not on any over-the-counter meds. Recently, I have used a strong cannabis creme for arthritis in my knees, and it's a miracle; however, CBD oil did not noticeably help with RLS in the past.
I have had 6-7 infusions over the past eight years. Occasionally, I was sure it helped. For the most part, I wasn't sure. I know it can take a few months sometime for it to take effect, but when I felt improvement about three months later, I couldn't be sure if it was the result of the infusion, or just a "quiet" period which might have occurred anyway. My family doctor is reluctant to order another one, given my uncertainty about the results, and knowing there are always risks, as with anything. However, it might be a good idea to have one anyway. I could push for that. Last week, she asked what the desired ferritin levels were and when I said 200, she was shocked and thought that was overkill. I know some of the experts will still order infusions even if your levels are that high. My most recent ferritin level was 122 in 2022. it has varied from 89 and 94 to 225 on one occasion. The low readings were pre-infusion, I think, and the 225 was after.
I once saw a video of a woman getting off Pramipexole by titrating it in a liquid form. I'm not sure I can get it in liquid form. There is an ad on the internet but it says for research only, not for private users. I wonder if that statement is to cover them, and it could be ordered anyway? Any thoughts on the liquid form would be appreciated. Again, thank you so much for all you've explained to me. I can't tell you how much you've helped by laying everything out so clearly.
Is your specialist at King's College Hospital by any chance?
Yes you can get it in liquid form. You would use a compounding pharmacist and your doctor would have to write a prescription to the pharmacist giving the ratio of solid to liquid.
Sounds like you should get a new ferritin test and that will probably qualify you for a new infusion.
I agree. Thanks so much for all your interest and help.
I referred the first movement specialist I saw to that paper. She didn't appreciate it...
Forgive me but this post is so long I am not sure what paper you are referring to.
My bad. The Cleveland Clinic guidelines for RLS treatment.
Unfortunately some doctors can be like that although it is more common in the UK when one mentions the Mayo Clinic Updated Algorithm for RLS. You would think though she would have respected the Cleveland Clinic.
I think she didn't like being called out. I was respectful, too. I had to explain why no more DAs for me. A movement neurologist!
Hi again, Sue,
I'm going to pass on your recommendations on how to wean myself off Pramipexole to my neurologist and family doctor when I see them next week.
I would like to be able to tell them about Health.org and reference the credentials of those behind it or associated with it. Does Dr. Buckfuhrer, who is mentioned often, have an advisory role here or what is his position , if any? ( As we are Canadians, I know it will help my cause to mention he is a graduate of Canadian universities. 
That's just human nature.)
Do you and Jools have medical credentials or other credentials related to this field?
I started decreasing my Pramipexole from 2 x .25 mg daily to 3/4 of a .25mg ((0.188) in the afternoon and .25 in the evening. It's only been two days, but so far, so good. I will stay at this dosage for two weeks, and if the RLS gets too bad, I will use Tramadol.
Thank you again. I hope you are able to answer the questions I've posed, so that I can offer some credentials from this great site to my doctors. If you'd prefer to DM me for privacy, I will give you the information you'd need to do that.
WendyBea
Dr. Buchfuhrer is not related to this forum in any way but he is an author of the Mayo Clinic Updated Algorithm on RLS which since that is in the US would be better to mention.
Nope neither Joolsg nor I have any medical credentials. We both went through what many others did and augmented on ropinirole and decided to learn everything we could about RLS and pay it forward by helping others.
Thank you again. Since you wrote it might be better to mention Dr. Buchfurer's connection to the Mayo and the fact it is in the US, does that mean you are not? Are you by any chance in the UK? I notice a lot on this forum seem to be. I appreciate your help and interest. I will let you know the reaction to the info I have gathered here after my appointments next week.
I wrote a couple o f minutes ago to ask if you are in the UK. Sorry. I now see you are in the U.S.
"Buchfuhrer" is the correct spelling in case anyone wants to Google him. And thank you, Sue; your contributions to these pages will get you straight into heaven, whether there is one or not!
I agree about the opioids to help manage the daytime rls, that's what I did. I weaned off the DA and now I'm fully off it a number of months and my rls has greatly improved, I still get evening rls but I take gabapentin & opioids at night and I get at least 6 to 7 hrs of uninterrupted sleep most of the time now, it's really difficult to get off the dopamine meds but so worth it! Good luck
Hello I've been off ropiberole now for around 11 weeks, ut wasn't easy buy with the help from Sue on here and others. I'm proud to say I've done it. It was easy I'm not going to lie and wanted to give in during day a few times and take one I came off very slowly whilst adding gabapentin and now I'm sleeping most nights right through but have had a couple of bad nights, thru my fault of forgetting to take the gabapentin, which is I suppose a positive sign that they are working as I feel so good. I'm now on 600mg at 6pm and 600mg at 8pm. Altho I do have the odd day when it kicks in and I can't settle, so will have to ask for advice from Sue regarding this, as to whether I should up the dosage still. I can also say it never stopped me working, I do hope it doesn't you. I wish you lots of luck for a positive outcome and a life free of this awful drug.
Yes up the dosage and take the additional at 4 pm
I augmented on ropinerole and then pramipexole (my PCP didn't understand about augmentation). Wean VERY slowly. I was told to quit cold turkey (exactly 4 years ago today...) and it was a terrible experience. Slooooooow!
I have been on, for the past four years, a three-drug regimen: gabapentin, Horizant (a longer-acting form of gabapentin), and hydrocodone. I have a regular dose of gabapentin and then a "slush fund" for earlier onset days.
Now that isn't working well (especially with the PLMD/periodic lime movement disorder), so I'll be switching to Lyrica and hydrocodone.
Some foods can be triggers. Any artificial sweetener will set it off for me, as does too much stress. Some people find some relief with compression socks; I don't get much from those, though.
Good luck! Those without RLS have no idea. I tell them to imagine their vonrs are full of electric worms; sometimes that helps them see!
Thanks for your information. I've often wondered about artificial sweeteners. I weaned myself off Diet Coke, because it contains caffeine. I though Coke Zero did not, but it does have caffeine, too. I switched to diet ginger ale and have at least one per day. Maybe I should give up artificial sweetners altogether?
I did. My doctors agree o n this, too.
So my post kind of got sidetracked into multiple directions. LOL! My concern is still how to withdrawl from Ropinarole without losing my mind during the DAY. I have something for nighttime but the US is so paranoid from the abuse of opioids that only a miracle would help me find and get an appointment in the next 6 months with a doctor that would prescribe them. I researched Kratom but saw a lot of people who also had issues with that and it was quite addictive. I get paranoid with I smoke pot, haven't tried edibles but I do live in a state that sells them if you can get a medical marijuana card, but they don't give them for RLS. I'm encouraged to hear that for some as they reduced the Ropinirole the daytime became less. Just to review my doctor handed me the Pregabalin and a sleeping pill and said not to take the Pregabalin until I am completely off of the Ropinirole. I asked her with tears in my eyes how I could do that when I have to stand, walk-in-place, or pace around my house for hours inbetween doses? She said, that I had to get off the Ropinirole before I could take anything else, period. It takes months to get an appointment with my doctor to try and get the test for my Ferritin levels. I requested an iron level blood test last October at my annual physical and they didn't include it. I appreciate all the suggestions for testing but where I am in Colorado things move pretty slow and the insurance is resistant to almost everything. I mentioned the iron infusion and was told it was too dangerous! So this is what I'm facing. I appreciate the referrals to a doctors in Denver but that's not really possible for me to get there, I need a doctor in Colorado Springs, Colorado covered by my Insurance and Medicare. So that's just about covers it.
Hi l had day time RLS mine would start around 15-30 and then the worst episodes at 10pm l no longer suffer from the insane leg twitching aching constantly moving them about l came off my opioids March this year premaprexol is what l was taking having to keep upping the dosage to a point where there was no where else to go l went cold turkey was really ill had to see out of hours doctor who knew quite a lot about RLS which my own GP did not he then told me about this medication they have been using in the USA named Buprenmorphine it was initially used for people with hard core drug addiction to help them come off the drugs they where using a bit like using Methadone cut a long story short he prescribed it for me he did say l may have trouble getting it repeated by my own GP well l did get it prescribed because it stopped my legs in there tracks and also helped my withdrawals off premaprexol l take 1 A day every 8 hours 200mcrgs each tablet they may help you to come off your medication without getting all the withdrawal symptoms please explain to your doctor as many UK doctors won't prescribe this medication as they don't know enough about it and RLS good luck l hope l have been some help to you 🤞
Yes I have on occasion had this during the day I don't know what to suggest but please get off ropinerol it causes serious oedema
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