restless leg : I am still in the midst... - Restless Legs Syn...

Restless Legs Syndrome

21,483 members15,160 posts

restless leg

Mungral23 profile image
1 Reply

I am still in the midst of weaning of ropinerole.it’s aweful . I too have same issues. I’ve started pregabaline

Written by
Mungral23 profile image
Mungral23
To view profiles and participate in discussions please or .
1 Reply
SueJohnson profile image
SueJohnson

Welcome to the forum. You will find lots of help, support and understanding here. But we need to know more before we can help you. By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and if you have any other health conditions.

I'm not sure what your question is but let me guess. You need advice on weaning off ropinirole so you aren't suffering as much?

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. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. 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. Others have used kratom or cannabis to help temporarily.

Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 75 mg pregabalin. Normally you would 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 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Most of the side effects of 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. 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."

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, foods that cause inflammation, ice cream, eating late at night, 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, 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.

You may also like...

Restless leg syndrome

Hi, I have been dealing with this for about 6 years. It's very annoying. I was prescribed Gabapentin

Restless legs syndrome

I have been struggling with RLS for over 4 years. I can't sleep more than 3-4 hours per night. I...

Restless Leg Syndrome and Mirapex

Hello, I have severe RLS. I have been taking Mirapex for about 3 years. It was a relief to find...

Restless legs. Struggling a lot.

I am 24 . I have fibromyalgia and restless legs. I have been prescribed ropinirole on 1mg for 2...

Rhabdomosis and restless legs

I would not wish it on anyone. I could have died and I am still upset after two years that I had to...