ropinirole to gabapentin

[Gingersnapsrls]

I have been on a low dose ropinirole (.5mg) and am switching to 100mg gabapentin. My dr said to just switch meds and not wean from ropinirole first. Does this seem OK?

[SueJohnson]

No, No, No! Your doctor is wrong.

Welcome to the forum. You will find lots of help, support and understanding here.

First off check if you are on the slow release ropinirole . 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 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.

Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin are. 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.

The beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls beginning dose is 100 mg ] 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 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.

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 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 . 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? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.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.

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.

[Joolsg]

Oh good gawd. When will the negligence & incompetence stop??? These drugs are powerful, brain altering chemicals, not vitamins!Are you in the UK or USA? If here in the UK, please do consider a complaint to the RCGPs.

RLS-UK campaigned to get RLS taught to UK GPs, but the RCGPs refused. They said GPs would know how to treat RLS correctly. That's patently untrue, as proven time and time again on here.

As SueJohnson advises, a slow withdrawal is advised.

Withdrawal is hellish.

Did the doctor advise about iron levels and arrange iron panel blood tests? Did he,she advise you how to take gabapentin and the average dose?

If not, include that information in the complaint.

Doctors will remain poorly educated and ill informed until we all complain about the poor, negligent treatment we receive for such a serious disease.

[Texas71]

I’m sorry, but I have never been on either one of those medications. I am going by the way of holistic medicine. I would advise you to give red vein Kratom a try. It’s the only thing that’s ever helped me. You have to be over 21 to buy it and I get mine from Kratom Country in America, you can find it by googling Kratom Country. It is from a leaf from a plant that grows in countries in the Far East. The red vein is relaxing and helps calm restless leg. I have used it now for almost 2 years and have very few RLS problems. You can contact me for more information if you’d like. It helps calm your nerves and ease anxiety.

[ProudGreatNana]

I really couldn't advise you on that. I have been on Ropinrole for several years. I am at the max dose. Don't know what the next step will be. Doctor had me on Gabapentin for a short time. I don't remember what it was for. Not necessarily the RLS. I couldn't take it. I believe it may have interferred with other medications I am taking. Sue Johnson is so versed in these things. She is the best person to ask. Good luck.

[PWMoo]

I've only been on Ropinirole for less than two years, prescribed primarily for extreme PLMD (periodic limb movement disorder) as well as RLS, following a sleep study (probably my 6th over the years.) RLS was severe after a broken femur trochanter with ORIF (rod and screws.) I'm prescribed up to 1.0 mg, but seldom take more than 0.50 mg. I haven't had any issues as others have. Others here will know about weaning off of it. Years back, I was on up to 900 mg of Gabapentin, then reduced to 600, eventually 300. I don't think it had any effect on my RLS at all. The higher dose made it very difficult to concentrate (and I was in grad school.) I was down to 100 mg, supposedly for migraines, but took myself off when I learned of a study suggesting it interferes with new brain cell production, particularly in older adults.