I’ve been on ropinirole for 10 years now plus 5mg during the day if needed and 1mg at night I find this helps my question is my back is very itchy especially at night I’m just wondering if it’s the ropinirole that’s causing this any one else having the same problem
Yvonne
As you've already seen reading previous posts and replies here, ropinirole (and the other dopamine agonists, pramipexole and rotigotine) is no longer recommended by experts in RLS research and treatment for RLS except in exceptional circumstances. This is because of the dangers of augmentation (where you have to take more of the drug, or symptoms start earlier in the day, or spread to other parts of the body) and impulse control disorders (impulsive shopping, spending, gambling etc).
While the NHS and NICE (and therefore UK doctors) are lagging behind the latest research, even NICE recognises that the maximum recommended dose of ropinirole for RLS is 4 mg daily. Are you really taking '5mg during the day if needed and 1mg at night' or is the 5mg a typo for 0.5mg?
If you are taking ropinirole during the day is this because you are getting RLS symptoms during the day (a classic sign of augmentation) or have you also been diagnosed with Parkinson's (where the amounts prescribed are higher, and divided doses are common)?
Yeah typo 0.5during the day if needed usually if I’ve had a crap sleep not due to restless legs but take 1mg at night
You're in the minority if you haven't suffered augmentation after 10+ years.
Itching and skin rash can be a sign of an allergic reaction to ropinirole, but this seems unlikely as you've been on it so long and haven't recently increased your dose.
Have you recently added/changed other meds?
BTW, are you aware of the RLS-UK list of medications to avoid?:
hi Chris that’s why I’m asking do people itchy back is related to repinerole . I probably have been on it to long but it works . I’m not aware of other medication to avoid . Is their a list some where
It (a list of medications for RLS sufferers to avoid) is linked at the bottom of my last reply above.
Ropinirole is not recommended where there's a history of hypersensitivity/allergic reaction (including urticaria, angioedema, rash, pruritus) to ropinirole or to any of the excipients. An allergic reaction to ropinirole is *possible*, but it still feels unlikely in your case if the itching has only started recently. I suppose it might be a first sign of augmentation, but let's see what others say.
As far as other drugs which *might* be linked to pruritus/itching go - there's a very long list below (and beyond this list one *can* develop an allergic reaction to almost anything):
Antibiotics:
Penicillin antibiotics (e.g., Penicillin G, Amoxicillin/clavulanate, Ampicillin); Macrolides (e.g., Erythromycin); Trimethoprim-sulfamethoxazole; Cephalosporins (e.g., Cefotaxime, Ceftazidime); Quinolones (e.g., Ciprofloxacin); Tetracyclines; Metronidazole; Rifampicin
Antimalarials:
Chloroquine; Amodiaquine
Blood Pressure Medications:
Angiotensin converting enzyme inhibitors (ACEI); Beta-blockers; Hydrochlorothiazide
Heart Medications:
Statins; Heparin
Other Medications:
Allopurinol
Iodinated contrast agents
Opioids (e.g., morphine)
Serotonin reuptake inhibitors
Anti-epileptics
Antidepressants
Analgesics
Immunosuppressant medications, such as cyclosporine A
Anticoagulants:
Rivaroxaban, apixaban, and dabigatran
And of course it might not be a drug at all: a new fabric, a new detergent...
Chris Columbus has given great advice.However, my concern is why you are taking 0.5mg in the DAY if needed.
Daytime RLS is the first sign of drug-induced worsening (augmentation).
Please be very careful. As you have been on Ropinirole for 10 years- it's highly likely augmentation has already hit.
I was in denial for 4 years. I'd get RLS in the daytime during a flight/long car journey/cinema. I'd take 0.5 mg Ropinirole.
But as I was sleeping through the night, I thought I was fine.
Soon, RLS spread to my hands, arms and face.
So look at the augmentation signs and keep an eye on symptoms.
There's an iron therapy page and a withdrawal schedule under 'Useful resources'.
I only get it through the day if I’ve not slept great which is happening a lot the not sleeping great so I take the 0.5 which is most days now TBH never thought of augmentation why does that happen? I’m beginning to think I need to speak to my doctor any suggestions of medication changes
Dopamine Agonists up regulate D1 receptors and cause them to be hyper excited. That causes severe RLS, daytime symptoms and symptoms in arms, hands etc.Experts in the USA who treat thousands of RLS patients every year are clear that everyone will eventually develop drug-induced worsening. DAs cause permanent damage for many people as well.
It creeps up on you. It's insidious.
Why are you not sleeping? Ropinirole should completely cover all RLS symptoms in the first few years. If RLS is waking you- definitely augmentation.
Read the RLS-UK website and learn all you can.
Ensure serum ferritin is above 200ųg ideally via iron pills every other day or iron infusions.
Think it’s life factors my not sleeping doc wanted to put me on amatriptaline but I said no because it makes them worse plus I work shifts
Joolsg is right. You are suffering 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.
You also said on your profile when you joined that sometimes it doesn't work.
This means you need to come off it.
Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
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. 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). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. 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? This is the first thing a doctor should do for RLS. 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 without progesterone, 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.
hi , I do not recall having an itchy back but seem to sure with twitching nerves mainly arms legs and shoulders like an itch.
Switching from Ropinirole to Mirapexin. 
gabapentin and Ropinirole 
Ropinirole - Blackouts =(
ropinirole for travel?
Take Ropinirole and Gabapentin at the Same Time?
