I have trawled the posts for answers but I cannot collate them into a story that might apply to me.
I have had RLS for 30 plus years obviously before they knew what it was.
I have maxed out of Pramepaxole, then they put me on Ropinerole which i am now on 3mg a day out of a maximum of 4mg. Obviously it has all augmented underneath and if I don't take them then we all know what those nights are like.
I just asked my GP (in the UK) if I could a) see a neurologist and b) talk about an exit strategy for the Ropinerole as I am nearing that maximum and life after that seems daunting. She told me that I had to be on the maximum dose for 3 months before the neurologist would consider seeing me! Ludicrous. I said that I wanted to reduce these meds as I wasn't made aware all those years ago what the down sides were.
So I want to try different things but won't know if they're working as one can't come off or reduce the meds significantly enough to test out any new regime. The GP has now prescribed Geberpentin to take with the 3mg of Ropinerole but my point is that the 3mg is still just about doing the job and I don't want to take the maximum dose.
I know there are different reasons why people have RLS but mine is defo dopamine as, if I go on my blasted phone when suffering and release that lovely stuff, it quells it significantly.
So my question is. What do you experienced people think my path forwards should be? I'm having a blood test in a few weeks to see where I'm at. My iron is ok according to the last two tests. How do I reduce the ropinerole and add in other things that I should try like high magnesium (how many mg)? etc and indeed what do you all suggest to try?
I feel let down that my GP just threw these hard core drugs at me before properly making me aware of the long term implications and I want to try to get off these and take less harmful/natural remedies so any help would be appreciated as I'm obviously not going to get to see a neurologist any time soon!
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Jemski4
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Gabapentin would likely be useless given you are still on DAs. They say not to start it until your final month of weaning off DAs. While you have an aversion to strong meds, I suspect you will benefit greatly from buprenorphine or methadone when you start your withdrawal. Buprenorphine helped me, and countless others here, be able to wean off pramipexole. Because of likely dopamine receptor damage, gabapentin still doesn't do anything for me (9 months after last DAs). So I continue on a low dose of buprenorphine to control my RLS. It's not a fun situation to be in - struggling with opioid side effects perhaps forever. But it's better than the alternative of suffering with RLS. Unfortunately it's a struggle to get buprenorphine prescribed, especially in UK. Depending on your location, I think Sue and Joolsg have some doctors to recommend.
thanks so much for your reply and I feel for your and all of our situation. That is strange the GP is saying take gaberpentin at the same time then! I’m anti drugs per se, just these bastards lol. If gaberpentin isn’t too bad that’s fine. I’m not so sure about pregabalin long term. Have heard some negative things. What I take from that is that i need to get off these DAs first.
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. Ask for a prescription of these if needed. 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, Neupro 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 them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls the beginning dose is 100 mg ] I would wait to start it until 3 weeks before you are off ropinirole since as Twitcher said it won't help while you are on ropinirole and it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg 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. If you take magnesium even in a multivitamin or magnesium-rich foods, 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 don't take it nor calcium-rich foods within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
You say your iron is fine but 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. And doctors will say it is normal but what is normal for others is not normal for those of us with RLS.
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 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 up-to-date 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, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative
Thank you Sue. I know you are a massive contributor to this forum and I thank you. As I said to Twitcher what a thing to recommend going on gaberpentin before getting off the DAs. Ffs. I’ll get the next blood test expanded to include what you say with luck. I guess as I reduce the Ropinerole and experience worse symptoms I can see if other things work. I think mine are not slow release. I am 59 and only take thyroid meds and no frequent OTC meds. My diet is pretty good and low in those things you mention. Except maybe the carbs. Yum. Dang. lol. Thanks again for your advice.
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium. DAs like ropinrole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism can make RLS worse so want to bring it up. Individuals with hypothyroidism may have prolonged and exaggerated responses to opioids.
If you go on pregabalin the advice is slightly different. Beginning dose is usually 75 mg pregabalin [If you are over 65 and susceptible to falls beginning dose is 50 mg pregabalin.] Instead of adding 100 mg when you start to increase, you add 25 mg. You don't need to split the doses but can take them all at one time. You don't need to take magnesium 3 hours apart. Not sure about calcium. The usual effective dose is 200 mg to 300 mg.
How disgraceful and negligent of your GP.You augmented on Pramipexole and were negligently switched to Ropinirole. Your GP does not understand the mechanism of augmentation. It up regulates the D1 dopamine receptors and creates hyperexcitability. That drives the increased, severe RLS. Instead of prolonging your suffering on Ropinirole, the GP should have switched you to pregabalin and arranged an iron infusion.
If you experienced ANY impulse Control Disorder (shopping, gambling, hypersexuality) get legal advice asap.
Ignore the GP. It is incorrect, damaging advice.
Start the reduction now and follow RLS-UK website which is now anti dopamine agonists.
Print off the withdrawal schedule and the iron therapy schedule.
By the time you see the neurologist , you will be off Ropinirole.
You will need a low dose opioid to help settle the increased RLS at each dose reduction.
Start pregabalin around 3 weeks before last dose of Ropinirole. Your GP cannot force you to continue on these dangerous drugs.
Show him the latest guidance from Experts in USA. These drugs are no longer prescribed except in end of life scenarios! For VERY good reasons. See my post on AASM guidance.
Complete the Yellow Card Scheme to help other patients. We have to STOP these GPs causing so much suffering.
Take on board all of the advice given above. I was on ropinerole and got down to the last tablet over a period of months using CBD gummies and Co-codamol. I then persuaded my doctor to give me gabapentin. I had to shave down the last ropinerole. The gabapentin worked for me from the first dose. PLM stopped immediately. I only had to up the gabapentin to 400mg. I was lucky . I take iron tablets at night and the occasional Co-codamol to help me sleep. I do have to watch my diet though. No eating after 6pm. No ice cream at all etc. A food diary was essential for finding my triggers.
Thanks for that Tryffan. Heartening. I haven't nailed any dietary triggers apart from more than one beer lol. Will try to experiment with the ones listed. The ending eating early is one I hadn't heard. Out of interest, does doing a dopamine releasing activity lessen your syptoms? As I say, if I go on my phone and play backgammon the symptoms improve dramatically.
I believe it does have an effect. I do a lot of crafting . Taking yout mind off the rls does help to a point, but I found it did break through eventually !
Hi Jemski. Sorry to hear about your problems and your dreadful GP. I can't help re the drugs, but I can affirm that dopamine-releasing activities have a very positive effect on my RLS. I'm a keen spinner/fibre-lover and I find that if I have to get up in the night with RLS, just looking through some of my fibre texts, sheep-breed pictures (niche, I know!) or playing about with some fleece for 10 mins or so is enough to get me back to bed without RLS. Also, I often get bad RLS in the evenings, but I find that if I'm absorbed in some fibre-making activity it doesn't arise at all. Good luck with getting off the DAs!
Sorry for my informal language lol. I know there are different causes for RLS but mine is definitely a dopamine issue. It is well known that smart phones are addictive because they release dopamine. By lovely stuff I mean dopamine. So if I am suffering and go on my phone it releases dopamine which calms the symptoms significantly. The problem is that they start again 5 minutes after I put the phone down but at least it is a brief reprieve.
The medications that you've been taking are intended to dampen down the signals sent out from the neurons (nerve sensors) not address the cause of why the neurons are sending out the spurios signals that you perceive as RLS. The thing most likely to be the cause is inflammation and that can be caused by an infection such as a yeast infection or toxicity from environmental mould but more likely to be due to inflammation caused by your diet. oxidative foods like refined seed oils and refined carbohydrate. I've eliminated my RLS without medication by rigorously changing my diet to avoid oxidative foods and add in foods that have anti oxidative propetries.
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Tried going privately to see a neurologist
update from Ruffabug (End of life plan)
Appointment with neurologist 
Needing to get OFF Pramipexole
GP knew less than I did about RLS :’-(
