Switching from Ropinerole to Pramipexole

[Elaniemarie]

Is it worth trying a switch after nearly 20 years on Ropinerole? Has anyone tried this and been successful?

[SueJohnson]

Why do you want to switch and how much are you taking?

[Madlegs1 in reply to SueJohnson]

Exactly.👍.

[Elaniemarie in reply to SueJohnson]

I have been on Ropinerole for nearly 20yrs, 2mg 3 x per day, reduced to 2mg 2 x per day, and wondered if the side effects would be better on Pramipexole. since I posted this I have done more research and decided to come off altogether. I have noticed they are recommending Opioids now. I have been taking Dihydrocodeine as backup for years, but so far only am given 15 per 4 weeks for some reason ( budget I suspect) it was thought to be addictive, but there are arguments against this theory more recently. Any thoughts, and thanks for replying by the way

I suffer severely from RLS and have it every day, all times of the day, in my hands, torso arms and legs. I have had this worsening affliction since childhood, and prior to Ropinerole, would be found up every night, pacing the floor for hours at a time. At least I do get approx 3 hours sleep most nights! if I dose up with Dihydrocodeine. I also have M.E and depression and Osteoarthritis. A vicious circle! I have had enough.

[SueJohnson in reply to Elaniemarie]

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

To come off ropinirole , reduce by .25 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. 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 ropinirole 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).

Have you had your ferritin checked? If so what was it? 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, 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.

[Munroist]

It sounds like you are suffering from augmentation as you are getting symptoms all times of the days and in your upper body and torso. I believe you are on the maximum dose at 4mg a day and clearly have been higher so after 20 years augmentation is very likely. Please read the pinned post on the forum regarding augmentation and also this link:

rls-uk.org/augmentation-reb...

I expect Sue will respond with her standard approach to reducing and coming off dopamine agonists which needs to be done carefully to minimise withdrawal effects

[Parminter]

Pramipexole destroyed me. I augmented rapidly, became extremely OCD, and never slept. It is highly addictive.

We are all different, but the consensus is that this drug will hurt us all in the end. Some sooner, some later.

I think it should be banned. Or at least used in a different way, where very regular drug holidays are taken to stop the drug from destroying the part of the brain that causes this. And only if you insist upon truly informed consent. And very few doctors know enough to inform you of anything regarding this condition.

If I sound angry, it is because I am. Very.

[Firenze1]

I believe they're pretty much the same thing so wouldn't take it myself.I've recently switched to Pregabalin and it's going well so far. It's all down to the good advice, information and support that I've received from this site that I've been able to do this so I'm eternally grateful. Basically had to tell the GP their job and the neurologist I was fortunately referred to had never heard of Pregabalin being used for RLS and was still prescribing Ropinirole!!