ropinirole patches: I have been taking... - Restless Legs Syn...

Restless Legs Syndrome

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ropinirole patches

albax profile image
7 Replies

I have been taking Ropinirole for several years in increasing doses and am now nearly up to the maximum of 4mg. My doctor has prescribed 1mg patches but doesn't seem to know much about the condition and is a bit vague about the medication. Getting an face to face appointment is almost impossible.

My question is can I apply the 1mg patch daily and supplement it with the tablets but not exceeding 4 mg total? Thank you.

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albax profile image
albax
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7 Replies
Trooper2017 profile image
Trooper2017

My specialist took me off of Requip because I was I was on 3 mg of that medication and the specialist took me off because the higher the dosage the earlier in the day it starts. He put me on 5 mg of Methadone plus kept me on 1200 mg of Horizant. After 40 years of suffering, I am a happy person.

albax profile image
albax in reply toTrooper2017

Thank you Trooper. Are your symptoms particularly severe?

SueJohnson profile image
SueJohnson

1 neupro is equivalent to 1.5 ropinirole so if you took 1 neupro and 3 ropinirole you would be taking the equivalent of 4.5 ropinirole which is over the maximum.

You have had to increase it over several years to control your RLS you may be 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. If that is the case you will need to come off it.

Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It 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. 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). 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. 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) daily." 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...

albax profile image
albax in reply toSueJohnson

Thank you very much indeed for your full and detailed responses. This is the most useful and relevant information I've ever had on the subject. I will send a précis of this to my GP and ask them to review my investigations and treatment.

SueJohnson profile image
SueJohnson

Have you had your ferritin checked. If you haven't 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.

SueJohnson profile image
SueJohnson

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, 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, 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.

Joolsg profile image
Joolsg

The fact you have had to keep increasing the dose is a warning sign that Ropinirole is worsening your RLS. It's a daily occurrence on this site.Sadly, as you've discovered, GPs know nothing about the disease. It isn't taught at ANY stage in medical training and so poor treatment is common.

Learn as much as you can about RLS, spend a few hours reading any post headed Ropinirole, Pramipexole or Augmentation.

The Mayo Algorithm is excellent and sets out new treatment regime. The UK is about a decade behind the top US experts.

Follow SueJohnson advice. Increase your serum ferritin and slowly reduce Ropinirole by 0.25mg every 2 weeks. You'll probably need a low dose opioid like oxycodone, tramadol or codeine to settle the intense RLS at each dose drop. Cannabis helps as well and is now legal for medical use. The private clinics will prescribe it for RLS.

Once off Ropinirole, pregabalin is the usual replacement med, but take it at night only.

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