Side effects from and weaning off pramipexole

[emmamom]

I started on a low dose of pramipexole (.25mg a night) a few months ago. It helped initially, but in the last month I have had horrible insomnia (just can't go to sleep), my heart is beating faster than usual both at rest and when active, I feel just more jittery all over, I have nausea often, I've gained weight (especially in my belly), and my RLS is worse. Are these things common with pramipexole?

I wish I had never started taking this medication. I want to stop immediately but should I taper, even at this low dose? If so, how do I do that safely? How quickly do I go down and how long stay at each lower dose? Is there a suggested taper schedule I can look at anywhere?

Will I ever go back to the RLS I had before , because it wasn't as bad as this!

Thank you in advance.

[SueJohnson]

Yes you need to taper. First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off pramipexole, reduce by half of a .125] tablet 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 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) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (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)."

Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. 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 including in a multivitamin 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, 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. Keep a food diary to see if any food make your RLS worse.

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.

[emmamom in reply to SueJohnson]

First of all, thank you very much for this very thorough and helpful response.

I am NOT on a slow release version of the pramipexole. Your information will help a lot.

[Kiram]

hi, this does sound like it could be the pramipexole, but please don not just stop taking them , you will need help , I used low dose opioids, unfortunately my RLS never went back to what it was , 😢, but I was on Pramipexole for over 9 years , so maybe it won’t be as awful for you x

[Rushgram in reply to Kiram]

I am in the weaning process now. I have gone from Pramipexole 0.5 mg to 0.125mg. I feel like I’m stuck here though. I have been at this dosage for a couple of weeks. I’m taking 600mg of Gabepentin in the evening and then another 300 mg at bedtime. I also have Tylenol #3 and I am taking one at bedtime to try to ward of the RLS symptoms. I get a bit of sleep but then my leg starts. Will this ever end? I have been on Pramipexole for about 25-30 years. My Ferritin is only 39 - taking iron every second day. I also started taking B12. This is an exhausting process.

[Joolsg]

Follow SueJohnson tapering advice and start replacement meds. Were you on another dopamine agonist before Pramipexole? Ropinirole( requip).If this is your first dopamine agonist, it's actually a good thing that it doesn't agree with you. These drugs are no longer prescribed by experts because of the very high rates of Impulse Control Disorder and drug-induced worsening ( augmentation).Hopefully, the withdrawals won't be hellish because you have only been on Pramipexole for a few months.

[emmamom in reply to Joolsg]

I was not on another dopamine agonist before pramipexole. Thank you so much.