I've had RLS since around 2018/2019 and I didn't start pramipexole until 2019. I believe my RLS started with my Fibromyalgia but have never had a GP explain anything about it to me and during sleep studies no doctor has ever mentioned it as a possible contributing factor. I was initially on 2 pramipexole a day and around August 2024 my symptoms worsened to the point where I have been on 6 a day since October. For the past 7-10 days I've noticed my symptoms worsening again to the point where I feel like I can barely function. My RLS would be all my limbs not just my legs and my arms in particular are causing me to want to hurt myself by bashing my arms off things just to subside the symptoms. I don't do that anymore but it is a constant thought.
I finally started researching myself but would like some advice for going to my GP to discuss possible changes. The side effects of pramipexole were never discussed when originally prescribed and I was just happy to have the symptoms gone so never questioned it.
Any advice on how to approach the GP or what I should be asking for would be much appreciated.
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Whiterun
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Welcome to the forum. You will find lots of help, support and understanding here.
At 6 tablets you are taking one and a half times the maximum.
You are 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.
This means you have to come off it.
Comprehensive Answer for someone on a dopamine agonist who is probably augmenting
Ropinirole, pramipexole and Neupro (rotigotine) 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 uptodate on the current treatment recommendations.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut . To come off pramipexole, reduce by .half of a .088[.125] tablet 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. 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 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).
By the way gabapentin or pregabalin will help your fibromyalgia,
Have you had your ferritin checked? If so what was it? That is the first thing your doctor should have done. 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.
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...
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. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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 so much for your reply and all the information! I had worried from what I was reading today that augmentation was the case. My pramipexole does not have ER or XL so I do not believe I am on the slow release version.I do take other meds including 10mg citalopram 1 tablet a day. 20mg famotidine 2 tablets a day and fexofenadine 120mg which i take currently twice a day but sometimes have had to go up to 4 times a day due to symptoms. I have some very complex gut issues that I have to see a specialist dietician about as the gastroenterolist said it was beyond their expertise. I think the fexofenadine may cause a reaction but it really is a medication I can't do without, one missed dose and symptoms can be awful but I do only currently need two.
I also cannot take NSAIDs, any anti inflammatorys, PPIs or anything with aspirin in it.
I would also worry about taking opoids with my gut issues.
I would also take cylazine for nausea when needed.
Also sorry this is a lot but just to add I spoke to a private GP today who was going to perscibe another DA and advised to come off pramipexole by the end of the week I.e. take 3 for 2 days then 1 for days then be off them.
Aagh! NO! Refuse to consider another Dopamine agonist. It will very quickly cause severe RLS. Gawd the ignorance is getting worse.You are on several meds that trigger/worsen RLS. All SNRI, SSRI and tricyclical anti depressants are culprits. Safe options are trazodone or wellbutrin.
Cyclizine also triggers RLS. Safe anti nausea meds are zofran and Qwells.
You need to show this GP the RLS-UK website.
Meds that worsen RLS are listed.
Any doctor who advises a fast withdrawal from Pramipexole is seriously negligent. It's harder to get off these brain altering chemicals than to get off heroin or crystal meth according to the few experts.
And on your ferritin where they said it was normal and what is normal for others is not normal for those of us who have RLS, call up the office and ask what your ferritin is as you have a right to know (they may not even have tested it).
RLS-UK has campaigned for years to get dopamine agonists relegated to last resort meds.Follow SueJohnson advice.
Show your GP RLS-UK website which sets out clearly the dangers of Pramipexole and similar drugs. There is a withdrawal schedule and an iron therapy page under 'useful resources'. Ask your GP to read it and follow the advice.
RLS isn't taught at medical school or during GP training.
All patients diagnosed with RLS should have full panel iron blood tests FIRST and all meds reviewed to identify common trigger meds.
The GP must warn you about the VERY high rates of Augmentation ( that's what you are experiencing) & Impulse Control disorder.
I've just posted an article about ICD.
Get off Pramipexole, refuse to consider any other dangerous dopamine agonists and follow the withdrawal schedule.
You may require a low dose opioid to help settle the withdrawals at each reduction.
It's brutal. But once off Pramipexole, the RLS will reduce in severity and go back to just your legs(hopefully).
Thank you so much for this. I should've campaigned for myself more at the time but I was so desperate for anything and had just developed gastro issues from being on NSAIDs for too long I was just happy to have something that worked, until now!
Gastro issues affect iron absorption in the gut. Low brain iron is the leading cause of RLS.You should get your blood results and arrange an IV iron infusion to avoid gut malabsorption.
Over 50% of patients that receive iron infusions show dramatic improvement.
I've had bloods done so many times and get the usual 'everything is normal' chat every time. I'll definitely be more assertive in getting a proper blood panel done and getting detailed results
I was never even offered a consultation or anything at the time I called my GP. He probably just googled it and perscribed the first thing he read. Really appreciate how much help and information there is on sites like this!
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