Help getting off Ropinarole

[DogsCatsFamily]

I'm new to this group and this is my story. I've had RLS for over 20 years and was able to manage it without any medication until I was put on a new medication for anxiety which ramped things up to a daily extreme. Since then I got off that medication but the symptoms have not lessened any. Initially my GP tried me on Gabapentin but from what I've now read she didn't even come close to getting me to the dose I needed. So after a month on just 300 mg she started me on Ropinarole which has led me to where I am now. The RLS was under control for a couple of months and then I started having it during the day which I had never experienced before. I told my GP and she just said that over time RLS worsens; which I argued it hadn't for over 20 years until I was on the anxiety medication she prescribed. So she upped the Ropinarole dose twice as things just kept getting worse and worse over a short period of time. I knew something was wrong and I wasn't comfortable just taking more and more medication especially it was getting to the point now where I couldn't sit for more than and hour during the daytime without the RLS flaring up. I couldn't take a daytime nap, or just sit back and rest my eyes without it causing my to get up and move. I starting researching Ropinarole because I knew despite what my doctor was telling me it wasn't just all of a sudden just getting worse out of the blue. Sure enough I found several articles speaking the the issue of augmentation and it was all starting to make sense. I had to wait months to get an appointment with my GP and I told her my findings and she said I could slowly wean myself off the Ropinarole and start on Pregabalin. I was horrified and told her I didn't know how I could wean myself off even slowly because a couple hours prior to my nighttime dose I would have to walk around, stand or walk in place until it was time to take my next dose, so how could I go to work or sleep? She prescribed Trazodone for bedtime and had no advise for the daytime management. I left shocked and in tears. I'm on Medicare and 67 but I still work a part time job 5 days a week and I have no idea how to doe this and I feel abandoned by my healthcare.

[SueJohnson]

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

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.

Since you are having such bad symptoms, you might want to go up by a half tablet or even a full tablet to let your symptoms settle and then start reducing. If .25 mg is too much to reduce by you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 ) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

I know it will be hard but you can do it. Many on this forum have been through it.

On the gabapentin or pregabalin, 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 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. This is the first thing your doctor should have done. 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.

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.

[DogsCatsFamily in reply to SueJohnson]

Thank you, I've been reading your posts and appreciate your input. I did get an iron test 10-26-2023 Serum/Plasma 114, 29% Saturation, Transferrin 281. My doctor is of no help at all at this point. My question is whether going on Gabapentin is better or Pregabalin?

[SueJohnson in reply to DogsCatsFamily]

Your % saturation is find but you don't list your ferritin which is the most important part. It may not have been tested as it is not a normal part of testing for iron.

I always suggest you start with gabapentin because you can increase by a smaller amount and once you find the dose that works you can always switch to pregabalin if you want by dividing the gabapentin amount by 6 to get the equivalent dose. There are basically the same but pregabalin is easier to take because you can take it all in 1 dose.

[Madlegs1]

Absolutely criminal!

[Joolsg]

I'm so sorry about the negligent treatment you have received. You need to find a new doctor, preferably someone who is knowledgeable about RLS.Follow SueJohnson advice to get off Ropinirole slowly and to get the right dose of gabapentin or pregabalin. And you msy benefit from an iron infusion.

Do consider joining rls.org.

[DicCarlson]

Oh my! Another Ropinarole story of misery! Follow Sue's advice and rest assured there is light at the end of the tunnel. Luckily, I found this forum - docs waved Ropinarole at me with the advice "It's the only thing that will help you!" I resisted and found iron deficiency was the problem.

[Bieler]

I have suffered with RLS since I was a child and I am 67 also. My doctor prescribes me Tramadol and I take 50 mg 4 x a day. Never had to increase and have taken it for 10 years. If I have a breakthrough flare up, I rub Aspercreme on my legs which helps calm them. Tramadol does not help with any other pain I may have but does a miraculous job of taking away the RLS symptoms.

My doctor gladly writes me a script. I found Tramadol helped on a different forum and asked her for help. She knows how much I suffered and didn’t hesitate to help me.

Find a different doctor. I’m so sorry that your “doctor” is abandoning you. He should be ashamed! Best of luck.