Newbie

[Gardeninglover8]

Please forgive me if I am totally wrong as I have had zero sleep for two nights now. I was put on Pramipexole (i think that is what it is called) but when I needed to increase the dose to four a night I was unable to sleep due to insomnia, so two days ago I started taking Ropinirole which feels like it has made my legs worse and hence no sleep. Am I understanding the information correct that Ropinirole can actually make things worse and would be better off not taking it. From what I have read I think it maybe being caused by Ezetimibe which coincides with my restless legs starting so I will no longer take it and hopefully see an improvement, But I do not want to stop the Ropinirole if I have misunderstood what I have read. Any advice would be very welcomed

[SueJohnson]

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

Pramipexole and ropinirole are both dopamine agonists. They are no longer the first line treatment for RLS because of the danger of augmentation, 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.

It sounds like you are suffering from augmentation, The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

Unfortunately that means you need to come off it. Since you are suffering now, I would increase your dose to get to a level where your RLS is controlled. Then 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. 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 of gabapentin or 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 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). 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...

If you haven't had your ferritin tested, since you are suffering from augmentation, it is important that you do so. If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements 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, 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.

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 any other health conditions you have.

[Gardeninglover8 in reply to SueJohnson]

Thank you so much for all the information. I will update my profile just finding it impossible to focus at the moment I live in England. I did forget to say I was informed that I am anaemic at the moment and put on Ferrous fumarate 210mg (third day today) is that the best to be on or would I be better taking something else? and I also suffer from Rheumatoid Arthritis which has caused a lot of damage to my ankles and feet and take immune suppressant along with a biologic

[SueJohnson in reply to Gardeninglover8]

That one is fine. But if you are anemic, you would be better off to get an iron infusion which will bring it up more quickly. Do you know what your ferritin is?

[Joolsg]

Welcome to the site.First line treatment, before prescribing any meds should be iron treatment via pills or infusions. The vast majority will see dramatic improvement in RLS by raising serum ferritin above 100, preferably 200.

The next step should be a review of all meds as anti depressants and sedating anti histamines, statins, beta blockers and PPI meds all trigger /worsen RLS.

So reducing Ezetimibe is a good idea.

When did you start Pramipexole? If recently, it's good that it didn't work. Stop taking it and similarly stop Ropinirole. However, if you've been on Pramipexole/Ropinirole for more than a month, reduce slowly and expect a worsening of symptoms, which WILL settle.

Spend some time reading through rls-uk.org/medical-treatments. And the rest of the site.

Sadly, UK doctors aren't taught RLS and they're unaware of the dangers of Pramipexole and Ropinirole, which are no longer prescribed by experts.

[PWMoo]

I was prescribed Ropinirole for PLMD after having RLS for years and having a 6th sleep study (for REM sleep behavior disorder--brought on by Cymbalta?), and a number of years ago being prescribed Klonopin for PLMD with unacceptable side effects. RLS was worse after a broken femur a year ago, but better now with Ropinirole low dose. I will never take Gabapentin again. Had it for another condition years back while in school for a second career degree and could not concentrate. I also read that it may inhibit new neuron formation in older adults. I am concerned about possible future augmentation and any increased risk of Parkinson's. Are there other alternatives should a change be needed?

[SueJohnson in reply to PWMoo]

The American Parkinson Disease Association reports that the majority of people with RLS do not develop Parkinson's Disease.

The alternative is low dose opioids.

[anuke]

Hi,

I was on Ropinirole 2 tablets a day, didn't help at all and finally I took 6 tablets the maximum dosage doctor prescribed, didn't help. It made my legs worse. I have restless legs actually I am restless all over my body including hands. Things got worse and worse. I have tried all medications available in doctors today, but didn't get any help. nothing worked. But now I started to take SUBUTEKS tiniest piece of tablet and i am free from restless legs and restless body. I do buy it from my friend so GP don't give it to me. I am waiting specialist to see then i can update my feedback. so good luck, and try subutex if you can get from somewhere.

[DogBella]

Ropinirole?? My advise is STOP now before it controls you. It may seem to help at first but the longer you take it the worse the pain gets. It took me nearly a year to free myself from the effects of Ropinirole. I didn't sleep for months at night just walking round the house with pain in my legs. I really just wanted to die. With help of two doctors, I am now free of that drug . With the help of other drugs like gabapentin and Suboxone, I sleep 7-8 hours a night. Keep faith that things will get better for you.