Lyrica : My doctor changed me from... - Restless Legs Syn...

Restless Legs Syndrome

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Lyrica

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My doctor changed me from Ropineole to Lyrica and wants to slowly increase the dosage. I'm miserable but want the Lyrica to work. I was on the other since 2005. How can I insist on her upping the dosage quicker?

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ChrisColumbus profile image
ChrisColumbus

How long have you been off ropinirole, and how long have you been on pregabalin (Lyrica) and on what dose?

The following is extracted from the Mayo Algorithm:

"It is recommended to start treatment 1 to 2 hours before usual onset of symptoms. Treatment should commence at 75 mg of pregabalin daily (50 mg in patients older than 65 years) and be increased every few days as needed. Effective pregabalin doses are usually in the range of 150 to 450 mg per day."

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Plight in reply to ChrisColumbus

Off Ropineole about 3 weeks. Started me at 25 Lyrica after. My RLS is so severe my sister took a video. I moved literally moved every 15 seconds

SueJohnson profile image
SueJohnson in reply to Plight

If you have been on lyrica for at least 3 weeks, increase it by by 25 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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 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 uptodate on it at Https://mayoclinicproceedings.org/a...

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 when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

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.

Joolsg profile image
Joolsg

Hopefully your doctor recommended a slow withdrawal from Ropinirole and that you start lyrica ( pregabalin) around 4 to 5 weeks before the last dose of Ropinirole.Did your doctor take full iron panel bloods ?

yohlense profile image
yohlense

Withdrawing from Ropinirole should be done gradually, you can't just stop taking it. I tried that once and it was the worst 72 hours of my life. I am once again stepping down from it and am doing it gradually. I'm down to half a pill at night and this has taken 4 months approximately. I can't do Pregablin, it causes me lots of bloating and digestive upset, but it was working until I couldn't take the side affects. Hydrocodone helps on the severe nights.

Plight profile image
Plight in reply to yohlense

I'm pretty sure no doctor in my area will prescribe opiates. I don't know what to do. I haven't slept more than 3 hours in 3 nights

707twitcher profile image
707twitcher in reply to Plight

I’d urge you to check around on this. Either try to find a doctor with RLS experience or one that is willing to read up on it a little. The mayo algorithm, articles by Dr Berkowski, etc. all say opiate use for RLS is extremely unlikely to cause addiction and is very helpful. Buprenorphine has been a life saver for me. And my GP had never heard of it until I showed her the Mayo algorithm. What area do you live in?

SueJohnson profile image
SueJohnson in reply to yohlense

You might want to try gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Start with 100 mg and wait a week or 2 to see if you have the same side effects, if not add 100 mg and wait again, etc. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin."If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

SlaxGA profile image
SlaxGA

make sure to do all the research on Lyrica and know the side effects. extremely unwise to go up or down on that drug quickly as it can really mess with your body (that's what happened to me). whatever benefit Lyrica provides weigh that against the downsides.

Marzipana profile image
Marzipana

I have been off Ropinerole for about 3 months (I weaned off it gradually while starting/increasing Lyrica.) I sleep terribly at night. The RLS wakes me up every hour, so I get a bit of sleep,,get up and walk around an hour, repeat. I feel like 4 hours of sleep is the average. So Lyrica has not helped my sleep. I have, however, stopped having daytime symptoms. I don't know if that is due to being off Ropinerole or being on Lyrica. I've tried acupuncture, as well as CBD/THC gummies, but neither has helped.

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