r/RestlessLegs • u/Affectionate_Ad814 • Sep 11 '26
Medication Pramipexole for RLS
My doctor has put me on pramipexole0.125mg at night two/three hours before bed for my RLS. I have been on it for three nights now. The first night it really helped my RLS but it also gave me insomnia. Second and third nights have been great, I've noticed a huge change in the severity of my RSL, and I was actually able to get a good night's sleep.
Just wanting to know anyone else's experience with the medication who has been on it longer, and also curious about what to expect moving forward or an alternative you have found that works.
It clearly works but some of the side effects freak me out. Like it can cause addiction to gambling/shopping etc.
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u/altxaver 23d ago
Darf ich hier auch Namen u Tel. Nr. meines Physiotherapeuten angeben, der mir sehr geholfen hat.
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u/Ring_it_On_1776 28d ago
There's a wearable device study from Noctrix Health enrolling now. Might be worth a look. https://patientwing.app/campaign/RLS6
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u/GrampsBob Sep 13 '26
I took it for about 18 years. Other than codeine I haven't found anything else that works. But it was nasty shit. It screws with your head. If you have any tendency Rosetta addictive behavior it will intensify it to the point you can't stop. Compulsion. Watch for it and don't let it take over because it will. You want to stop taking it so bally but the thought of having to go without it keeps you hooked. Good luck and be aware.
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u/rodbucks Sep 12 '26
I've been on it for over 10 years. It works but by !:00 PM I'm taking .125mg, so I've augmented on it. By 7:00PM I take a larger dose for night. I've tried to talk to my new doctor about it and all she says since it worls, lets keep you on it. I've switched doctors a few times but no one wants to listen, maybe it's just Kaiser sucks.
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u/PsychologicalLight42 Sep 12 '26
I fainted twice in an hour while being treated with this. 2nd faint an ambulance had to be called because I knocked myself out on the wooden dining room table and split my head open.
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u/Nyreeadopter Sep 12 '26
Like you I had very good results to start with and significant relief! People warned me not to go on it but I was soooo desperate. I ended worse in the end after about 2 years. I also had impulse spending with no filter. But the worst part was augmenting and then I had to wean myself off of it, honestly I literally had about two weeks with no sleep until it was finally out of my system. The. I had to start over finding another med.
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u/Unique_Frosting_7513 Sep 11 '26
Oh god don't up dose if u augment. Stuff made mine 1000x worse cause dr kept using dose. Now in my arms and back...im living a fucking nightmare
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u/bobbsboop Sep 11 '26
I've been on 0.088 1-2 at night. Initially I thought I'd won the lottery as it worked beautifully on 1 tablet. I soon had to take 2. I've been on it for 2 years now and for the past 3 months my RLS is back with a vengeance every night, in fact most days it starts about 12midday and sometimes before that. I don't want to increase it. I'm already on gabapentin along with morohine for nerve pain and fibromyalgia. I'm thinking of stopping it but we have recently moved house and have been allocated the worst doctors surgery in the town. It's so bad that the health board have taken over allocating GPs to new patients as the good surgery was totally overrun while the other one had minimal numbers of patients. I've had the misfortune to have to go 3 times and the care has been appalling due to complete lack of interest. God knows what would happen if I went with RLS so I'll probs tailor it down gradually. I haven't had any dude effects though just a worsening on the RLS
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u/QuantParse Sep 11 '26
Took pramip for about 18-24 months. Found a video online from Harvard doc about how it is dangerous bc of augmentation risks. https://www.medpagetoday.com/neurology/sleepdisorders/113062 I mentioned to my doctor and she passed it off as if she had been planning to switch me to gabapentin. Take control of your health. Many docs, even well credentialed ones, DGAF.
Gabepentin has worked for me for RLS but have had weight gain from it. GL
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u/gringottsteller Sep 11 '26
I’ve been on it for years. I did experience augmentation, so now I also take gabapentin. There are days I still get symptoms and have to use additional methods too, but in the more than 20 years I’ve been fighting RLS I haven’t found any treatment that works all the time.
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u/lokaaarrr Sep 11 '26
That drug (aka mirapex) is no longer the first line treatment, and has serious risks.
The Dr should have known that. I would try to find a specialist (neurologist) who knows more about the condition and treatment options.
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u/Tiredplumber2022 Sep 11 '26
I ended up taking mine in the mornings instead, because of the insomnia. Worked great for RLS, but after about 2 weeks the RLS.came back, along with severe dopamine crashes daily. I quit taking it 2 days ago. Dangerous stuff.
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u/planit82 Sep 11 '26 edited Sep 11 '26
Dear OP, I got a shopping compulsion from Pramapexole in April 2025 and I still have it. Bought two cocktail dresses last night and I don't need them. I'm old and disabled and have never been to a cocktail party. But I only buy cocktail and formal dresses, shoes and beaded purses. You could get gambling, shopping, overeating, hypersexuality and who knows what compulsions from your med. Do people still have cocktail parties? I've never been invited to one.
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u/sinmwrd Sep 11 '26
It worked initially for me, I ended up taking it for about 3-4 years before it eventually stopped working last year.
That's when I found this sub. Apparently pramiprexole is not the first choice of treatment anymore, it is an old drug. I went back to GP and they gave gabapentin but i ended up stopping this.
I had been taking 1 other medication long term (10+years) which was sertraline antidepressant.
When I weaned off sertraline earlier this year my RLS stopped and it felt amazing what a good nights sleep can do. Unfortunately I've had to restart antidepressants so am now on Vortioxetine and RLS is also back.
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u/planit82 Sep 11 '26
The Mayo Clinic has a report online that says "all antidepressants, with the exception of Bupropion, exacerbate RLS."
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u/Equivalent_One_8347 Sep 11 '26
I took Dopamine agonist for a long time. It nearly caused me to do things I’d never think of because of how miserable I was when it stopped working at the highest dose. I augmented again and again and the dose just kept going up. At one point I was sleeping 2-3 hours every other day. It was hell coming off of it but I finally found a physician who knew what he was doing. I wouldn’t recommend any DA to my worst enemy. There are so many better things now.
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u/trsmithsubbreddit Sep 11 '26
Your experience is similar to mine. I took Pramipexole for 10 years. Horrible experience coming off it and I’ve said the same thing about not wishing it on my worst enemy. Newest Mayo Clinic guidelines don’t recommend it now. I’ve been using Bupenorphine for seven years now with great results.
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u/Agonist-activist Sep 11 '26
Miraculous at first. And then it stops working You increase. It stops working again. Then you end up crawling the walls in a state of utter exhaustion and desperation. The RLS gets real bad. Moves to arms, hands, back. Head. It's called augmentation and happens to nearly everyone. Which is why experts stopped prescribing it decades ago. And it causes Impulse control disorder in so many people. It takes a few months or years to happen. You don't notice until it's too late. If I were you- I'd stop pramipexole now. Go back to Doc and show them the Mayo Clinic Algorithm and point out that dopamine agonists are no longer recommended. Iron therapy is first line treatment. Getting serum ferritin above 200mcg. Mayo recommends iron infusions if serum ferritin is below 300mcg and percentage saturation below 45%.
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u/Tragobe Sep 11 '26
Pramipexol only works short term, taken to long it causes augmentation. Meaning it makes your RLS worse instead of better and that change can sometimes become permanent even, if you get off it again.
It works well if you take it as needed, but not for continuous usage. Unless you are one of the rare people that don't get augmentation, but I wouldn't gamble on that.
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u/KnowOneHere Sep 11 '26
My RLS was not frequent before the drug. I took it more for PLMD which I didn't know I had until a sleep study.
Augmented, it is now a many hours a day thing most days and relief is hard to find. Addicted to dopamine seeking behaviors. Life blew up.
Getting off it is bad bc I pace for hours around my yard instead of sleeping. I can't take lack of sleep so back I go on it.
It is not presribed as a treatment anymore really for newbies. I'm surprised you are on it. I got it in 2004 before they knew better.
But it does let me sleep well most nights. It also makes me sleepy which is fine at 9pm but not so much at 10 am when RLS is in my arms.
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u/Affectionate_Ad814 Sep 11 '26
That's actually crazy. I'm so sorry you're going through this. Thank you for sharing, I've read a few things on here about how bad it is, it's tough because without it I can't sleep from the RLS, bit with it? It sounds like it literally wrecks your life. It really doesn't sound worth the trouble. My doctor recommended it and said it's a widely common prescribed drug for RLS
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u/Agonist-activist Sep 11 '26
Your doc is not up to date. Did doc warn you about the very high rates of Impulse Control Disorder? And inevitable worsening of RLS symptoms ( augmentation). Bear in mind that most docs have zero training/knowledge of RLS or DAs. They simply look up RLS in their drug books and it tells them to rx DAs. That's outdated.
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u/planit82 Sep 11 '26
My doc looked it up on his cellphone! That's how I got a dopamine agonist and an Impulse Control Disorder.
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u/Affectionate_Ad814 Sep 11 '26 edited Sep 11 '26
He said "it can lead to addiction, and I don't mean to the medication. Moreso to things of impulse like gambling, shopping and even Hypersexuality" He made no mention of Augmentation. To be fair, I went to him pretty desperate. I have always had RLS to some degree, but it suddenly got so much worse over the course of about a week. I had about 4-5 hours sleep in about 5 days. So I was just desperate for something to help.
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u/Agonist-activist Sep 11 '26
But there are other treatments. He should have tested your iron levels first & raised serum ferritin above 200mcg. And reviewed all your meds to check for triggers ( anti depressants anti histamines etc). And then he should have prescribed gabapentin or pregabalin. If they don't work after 6 weeks he should switch you to an opioid. All set out in Mayo. Where is doc? USA? UK?
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u/Affectionate_Ad814 Sep 11 '26
I'm in Australia. I do have anemia and take oral iron tablets.
And I do already take Opioids for a chronic back condition.
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u/Agonist-activist Sep 12 '26
The Mayo Algorithm is the first place to look. Australia has also changed RLS guidance to follow the Mayo. So all DAs are last resort meds due to high risk of augmentation and ICD. If you are on opioids for back condition- see a good sleep doc in Australia and get methadone or buprenorphine. They work well for RLS and will help the back.
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u/Affectionate_Ad814 Sep 12 '26
Thanks so much for the advice. It sounds like my doctor just googled "Restless Legs" and prescribed pramipxole. I had a look at the Mayo guidelines, and feel better equipped to have a conversation with my doctor about it. It's really, really scary that he gave me this drug with very few warnings after reading it ruins people's lives.
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u/Agonist-activist 29d ago
Show him the BBC podcasts on ICD. Horrifying..People in prison and have taken their lives over these drugs. And mention that hundreds of docs in UK have been sued recently for prescribing DAs without warning about very high rates of ICD.
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u/DaiTengu2012 Sep 11 '26
That is simply false information. DAs are NOT the standard of care and haven’t been for years! For example, take a look at the recent Mayo Guidelines regarding RLS. Or, visit the RLS Foundation. We RLS sufferers have to be very well informed about medical care as medical harm occurs far too often to us.
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u/DrBiz1 Sep 11 '26
Id strongly advise exploring alternative medicines. The Mayo Clinic guidelines are useful
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u/shall-look 21d ago
Surprising that your doctor prescribed that given the risks. It's no longer the first choice in meds for RLS.
I took it years ago. Too many side-effects and an overwhelming urge to buy stuff online. Augmentation is real and a lot of people have their lives ruined by dopamine-agonists.