I’m 36 year old male. Started experiencing RLS about 7 years ago. At first I didn’t know what it was and it was on and off. Good week, bad week etc etc. Few years later it started happening almost every night soon as I’m about to fall asleep and it gradually gotten worse. I went to see my doctor and he prescribed me pramipexole 0.088mg. I should mention that also had a blood test done and doctor said that it looked all normal and ferritin levels were where they need to be.
pramipexole helped me immediately and I feel like I have my life back. One year on and I’m still only occasionally have very mild RLS symptoms.
Once I’ve started reading posts on here I realise that pramipexole is a ticking time bomb. What should I do? Carry on or try something else?
Thank you for any advice
Written by
Kasp
To view profiles and participate in discussions please or .
You are right. You don't want to be on pramipexole. If you are still on just one .088 mg it won't be hard to come off it.
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 tablet (ask for a prescription of these if needed) every 2 weeks or so. 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.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine)are no longer the first line treatment for RLS. Gabapentin or pregabalin are. 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 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)."
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...
Do you know what your ferritin is? Doctors will tell you it is normal but what is normal for others is not normal for those of us with RLS. If you don't know, ask your doctor. Also ask for your transferrin saturation (TSAT) percent and post both numbers back here.
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, 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.
As usual - great advice from Sue. I would suggest the iron connection could be a big player. My raging RLS with low ferritin (49) was dismissed by docs "nothing to see here", 'till I read the Johns Hopkins Neurology website that low ferritin levels could translate to brain iron deficiency, a leading cause of RLS. Brain iron cannot be measured directly, so the ferritin level is used. Supplements (Ferrous bisglycinate chelate) mostly eliminated the severe RLS within a month.
More and more I read of gut connections to many neurological conditions including RLS. Probiotics - L. plantarum 299v (LP299v) has been shown to increase iron absorption. (available from Jarrow and in the Good Belly probiotic drinks). And, L. plantarum PS128 medical probiotic has been formulated to address the unique dietary needs of people with neurological conditions such as autism & Parkinson’s Disease.
L. plantarum PS128 is a new one for me - but there are many articles if you Google it - mostly for add-on treatment of Parkinsons, but also sleep disorders.
The L. plantarum PS128 sounds interesting although generally unlike those of us with RLS, Parkinson's patients usually have sufficient iron per Dr Buchfuhrer.
Hello, yes pramipexole will work wonders, it did for me on and off, for around a year then it didn't and after upping and upping the dose, I was changed to ropinerole again the doseage got higher and higher then went back on pramipexole etc etc., the cycle continued. Listen to everyone on here that has had to ween off these awful drugs and maybe try gabapentin, i have found them a godsend. Good luck and I hope you get sorted.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
pramipexole and nasal congestion. 
Nausea and pramipexole
RLS, Pramipexole & Vine Extract
Pramipexole-Help
