I’m new to this forum and might be making some mistakes here… so please bear with me.
I have restless legs and Rheumatoid Arthritis.
I'm on a biologic for RA.
I’ve been on Pramipexole for about 18 months for Restless legs and Naproxen for pain. I’ve been experiencing dizziness and stopped using Naproxen. Since I’ve been doing that I don’t get enough sleep.
I want to try Gabapentin now… which is supposed to help with pain as well.
How do I switch over . I cannot use nothing for restless legs until Gabapentin kicks in. Severe RLS will drive me crazy.
Any good positive results for anybody with severe RLS with Gabapentin? My RLS starts early evening .
I’ll appreciate advice 🙏
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YoghurtLover2
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Welcome to the forum. You will find lots of help, support and understanding here.
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 ropinirole (pramipexole) because the slow releases ones can't be cut if needed.
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.
Dopamine agonists like ropinirole, pramipexole and requip 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 pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled.
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 split the doses with 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.
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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg 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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Hi, Pramiprexole was really bad for me, augmentation was absolutely off the scale, having symptoms in my right arm and not being able to travel in a car without having to get out and walk about. As soon as I'm back seated it starts again, same with being in a cinema or theatre and flying is horrendous. The Dr put me back on ropinarol and codeine for top up when legs are so severe. The neurology consultant said he'd review me 6months from the initial appointment, I should see him in about 2months time. He said that of I have improvement he will add a gabapentinoid to my treatment. It's a living hell. I have found this site so helpful for advice and guidance. I'm the same , waiting to see what I do next. The consultant said I'd have gabapentin with ropinarol but having spoken to people that shouldn't happen, having both. It really is torture.
The RLS-UK withdrawal schedule sets out how you add gabapentin around 3 to 4 weeks before the last dose of Ropinirole.But it won't reduce severe RLS and won't start working until 3 or 4 weeks after the last dose of Ropinirole.
Any neurologist who ADDS gabapentin, without recommendation that you get OFF Ropinirole,.doesn't understand augmentation.
Augmentation doesn't stop or go away. It breaks through.
Here's the withdrawal schedule. Under 'Useful resources'.
Thank you so much for this information.Going back to when I first had RLS,I was pregnant and moving forward through time,it's just gotten worse and worse and now here I am like this.
I don't understand why augmentation starts and why it doesn't really go away. It's likes waves. Please can anyone help me to understand this ? I'm trying to learn about this suffering and read posts and help on here,it's a lifeline.
RLS with pregnancy occurs with about 30% incidence. It is caused by the growth demands of the fetus robbing iron stores from the mother. The iron connection could still be going on even years later. Curious to me that docs either don't know or disregard this connection and jump right to dangerous Dopamine Agonist drugs like Prami and Ropinerol. Simple iron supplements could work wonders! See Sue's advice above.
Hi, no I havnt experienced any of those side affects, thankfully.
At the moment I'm on 1mg ropinarole each evening and the consultant advised i double that to 2mg after being on 1mg for 4 weeks but I won't now. Honestly it's been a life saver finding this site and being able to seek help and guidance from you lovely people. When I did see the neurologist consultant I did mention to him after doing some research myself, I asked the Dr to wean me off sertraline 200mg, which I'd been on for about 20years. Citalorpam iv seen is the same as sertraline, makes RLS worse.
0.4mg sublingual Buprenorphine pills.My severe RLS went from 38/40 to zero overnight.
4 years later, I've never increased the dose and I never get any RLS.
I sometimes think I don't have it!
Utter bliss.
But as Dr Buchfuhrer says, 98% of patients should be completely RLS free with the RIGHT doctor, using the RIGHT tools.
Here in the UK there are only around 5 or 6 'right' doctors and we have the right 'tools', but UK doctors refuse to prescribe them due to opioid bias, lack of knowledge or postcode prescribing restrictions.
You are better off once off pramipexole trying gabapentin or pregabalin first. Opioids are usually reserved in case they don't work or have side effects you can't live with. And Opioids can have worse side effects plus there is a stigma attached to them and many doctors won't prescribe them.
Also in Canada a doctor needs a special license/permit and must take courses to be allowed to prescribe opioids.
I’m starting my “getting off Pramipexole “ journey tomorrow. Will taper down as uou suggested . Also starting Gabapentin tomorrow. I might add them some CBD to get me through the process. You have any suggestions for that? 🙏
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