I had a psychiatrist put me on this drug starting at two milligrams. I didn't think that was right so when I got home from the hospital I began to take myself slowly off. I'm down to 0.75. I am weighing the pill , Shaving it with a fingernail file to get down to This amount. I am so scared of it and so mad that I was put on it without my knowing the horrors of this medicine. Right now everything is great.It takes care of my nighttime restless.Leg. I have always had RLS for years but never bothered me until I went into a mental hospital for a week, Which is where this idiot put me on such a high dose. Now I can't even take a nap in the afternoon without having symptoms. I believe it's caused by this dumb drug. I have only been on it for 5 months and trying so hard to get off. My mental health disorder, which is generalized.Anxiety has now attached itself to my restless legs and that's all I think about. Working on that too. But the pill scares me so much.I don't know what to do. There is a doc in Colorado who says he can fix this by going into your leg.And doing surgery on your compressed nerves. My big question today is did this drug make my restless leg syndrome worse? At least my daytime restless legs? Am I doing okay by slowly,Slowly shaving the pill to get off it?
Requip: I had a psychiatrist put me on... - Restless Legs Syn...
Requip
Welcome to the forum. You will find lots of help and understanding here.
Forget the doc in Colorado. You don't want surgery. It can be managed without it.
Yes the requip which is ropinirole is causing this and you are suffering fro augmentation and need to come off it.
Dopamine agonists like ropinirole, pramipexole, and the Neupro patch are no longer the first line treatment for RLS. Gabapentin and pregabalin are.
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 you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
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. Weighing it like you are doing works if needed. 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, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 or antacids 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? 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(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Do you live in Colorado. I may be able to give you the name of a knowledgeable doctor.
My ferritin level is 627. The doc in Colorado is anderson podiatry. I live in michigan. I am looking for a doc here who can help me get off this crap. I was given gabapentin during one time period of this nightmare but I was not able to handle the dosage. Now that I understand how to mix a lower dose I will try again. My rls was not bad until the psychiatrist started playing around with drugs and each one made me worse. No one would listen to me when I asked if these drugs would make my rls wores. I now take low dose naltrexone which had given me my life back. But, I can not use opioids on ldn. I am going off requip to see how bad I am or at least back to what I was, which was not that bad. My new psychiatrist is wonderful and will work with anything I ask. He BELIEVES me. But he doesn't know much about requip. Shaving the pill seems to be working for now..... slow and steady. THANKS for answering me.
In Ann Arbor there is Dr. Anita Valanju Shelgikar - University of Michigan Sleep Disorders Center who is one of the authors of of the American Academy of Sleep Medicine (AASM) 2024 Clinical Practice Guidelines for the Treatment of RLS at jcsm.aasm.org/doi/pdf/10.56... recommended by flobbest
In Detroit there is Dr. Aaron Ellenbogen, Michigan Institute for Neurological Disorders who was recommended by PianoRunner who said he was knowledgeable about RLS.
In Ann Arbor there is also Dr Joseph "Andy" Berkowski who is excellent but he doesn't take insurance and is very expensive. relacshealth.com/blog He does teleconferences but the others might too.
You rock, thank you. One last question. Since I slowed down my doesage reduction I have not had any symptoms. Should I go faster or just go slow like I am ? I went from 2 mg to 1 then to .60. Now I shave a little more off every 3 days.
If it's working for you I would continue as it gets worse as you get closer to coming off it.
How long does that last... the "gets worse" part
Until you are off it and then you get the withdrawal symptoms which can last a few weeks or even longer.
Crap, what a nightmare. Is that when I should use opioids? I can get off low dose naltrexone for awhile. Scary stuff thank you so much for answering my questions. I have no one else to ask.
why are you taking naltrexone?
General anxiety. It has help tremendously.
You could switch to buspar for anxiety which would then let you take opioids if needed.
And if you try the gabapentin again you may not need opioids.
I did look into dr berkowski.... waaay to expensive. Good though.
Are you on trigger meds that might have caused the RLS? SSRI/SNRI/tricyclical anti depressants or anti psychotics?The first thing ANY knowledgeable doctor should have done was review and safely replace trigger meds and raise serum ferritin above 200ųg ideally.
Follow SueJohnson advice and continue to get off this drug.
The Mayo Clinic Algorithm for treatment of RLS was issued in 2021 and the new AASM guidance released in Sep 2024. You might want to consider legal action against this doctor as he has failed to follow the latest research and guidance.
Requip is now relegated to end of life scenarios by AASM guidance.
Thank you for your reply. No I got off all meds that made me worse. The mental health psychiatrist was horrible. He told me "just stop this bull sh.. and have a good day." I was stunned. If I could have done that I wouldn't have been admitted. I am doing well now just working on getting off this requip.
Sue's advice is spot-on as usual. For GAD, do consider this post...
forums.phoenixrising.me/thr...
Thank you so much
Ropinarole
ropinerole withdrawal 
RLS Requip (the devil med) and then Gabapentin(my savior)
Guidance required
