Hi everyone. Some background: last year I had both ankles fused and have had to learn to walk again. During the process my restless legs got worse and I started on Pramipexole. Slept brilliantly but didn’t like the side affects - massive tiredness in the legs. Soon became alarmed when I read about Pramipexole and want to come off. I have just done 5 days on one and a half tablets at night. I can sleep well on this.
I would really appreciate any advice on moving forward from this point. Many thanks to you all. ( By the way I have been on Pramipexole for about five months at two tablets each night. I am eating well and taking vitamins).
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To come off pramipexole, reduce by .125 mg 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. But in the long run, you will be glad you came off it. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) 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. 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. 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 of gabapentin or pregabalin 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 take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. Otherwise post here and we can tell you what you need to do. 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, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, 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, 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, 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.
Dear Sue, thank you so much for your speedy reply. What you had to say made a lot of sense and I hope to follow your advice. I have to say I am really surprised that a doctor has prescribed this drug; it appears be a lot more powerful than I ever realised.
My experience so far has put me off ever taking anything stronger than paracetamol. I hope I can manage to be drug free in the not too distant future. Thanks again.
It used to be the first line treatment which is why so many doctors prescribed it, but no longer is and unfortunately doctors haven't kept up to date. That would be great if you could be drug free but if you want your RLS to be under control, it is not likely unless one of the things that helps some people that I mentioned above works for you. The one possibility is if your ferritin is below 100. Improving it to 100 or more helps 60% of people with RLS and in some cases completely controls their symptoms. Don't be afraid of taking gabapentin or pregabalin if you need it. They aren't like DAs (dopamine agonists). You can always come off them without any withdrawal effects by doing so slowly.
Thanks again Sue. For the first time things are getting a bit clearer. One of the first things I will do is report to my doctor about how dangerous Pramipexole can be.
Do some people find the right dosage and live their life on this drug?
I’ve had RLS since childhood, but it got significantly worse when i turned 46. My doctor tried pramipexole and it also worked perfectly for the first 3 months for me. After that, it gradually stopped working and my symptoms not only returned, but much worse. What used to be restless legs also became restless back and restless shoulders. So I decided to see a sleep specialist who took me off pramipexole and started me on tramadol and gabapentin. It was not necessary for me to taper down from the pramipexole which was if I recall correctly 0.25mg. I would never go on a dopamine agonists again. Also, from what research I’ve done DAs are no longer front line treatments.
Thanks for telling me your story. I really appreciate it. I now realise how important it is to talk with someone who is an expert on the subject. Good luck to you.
I've been on pramipexole 0.18mg once a day for about 8 years and never had any problems but I always worry when I read of augmentation from others. I'm wondering if my turn is just around the corner.
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