Ropinirole: What are the problems... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinirole

Kippling profile image
8 Replies

What are the problems associated with taking Ropinirole, and what is augmentation please?

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Kippling profile image
Kippling
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SueJohnson profile image
SueJohnson

Up to 70% of people who take ropinirole or pramipexole will suffer 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 this happens you have to come off it and that can be worse than getting off heroin. If you post here we can give you some advice.

By the way I see fluoxetine listed on your profile. It is a SSRI antidepressant and makes RLS worse for many. A safe antidepressant is trazodone.

Also you say your iron levels are fine. Do you mean your ferritin as that is the one that needs to be checked . Doctors will tell you it is fine but what is fine for others is not for those of us with RLS. What is it? If you don't know, ask your doctor and post it here.

SueJohnson profile image
SueJohnson

Looking back at your previous post, it is obvious that you are suffering from augmentation. 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...

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, 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, 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.

Kippling profile image
Kippling in reply to SueJohnson

Thank you for replying Sue,I have been on Ropinirole for nearly twenty years. I could not manage without it. I do sometimes get the symptoms in my arms, but that is sometimes because my Ropinirole is due. I take one in the morning and one in the evening too. Without it, my symptoms are very severe. The only side effect is extreme drowsiness , although this limits me a lot, it's better than the symptoms.

SueJohnson profile image
SueJohnson in reply to Kippling

That is great. I hope it continues.

Gibsonrosie profile image
Gibsonrosie in reply to Kippling

Does the drowsiness stop you from driving.

Kippling profile image
Kippling in reply to Gibsonrosie

Yes certainly, there is no way I could drive, I cannot even use public transport, as I fall asleep, and have missed my stop more than once. My life is very restricted.

i have been takng Ropinirole for more than 30 years. Yes I am on a higher dose but I was told when diagnosed that I should expect it to get worse with age and he wasn’t wrong. I have tried other meds, but none work for me, so I’llkeep taking them

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