Ropinirole

[Nuthatch01]

Is anyone having problems getting Ropinirole from chemist, I have been to every chemist in our area but none of them have any stock?

[MissKegs]

Hi, I've also struggled to get ropinirole and now GP has asked me to start weaning off of it due to problems getting it. He hasn't got an alternative for me to take once I've stopped ropinirole so no idea what happens going forward 😞

[Strike26 in reply to MissKegs]

I was on Ropinirole until 6 months ago (now on Gabapentin) and there were constant problems with supply - on one occasion I had to go "cold turkey" for 6 days and it was not nice. My chemist (well known chain) were very clear that the issue was the supply chain from Asia where the meds are made, across the EU and into the UK - basically Brexit. They had posters up requesting customers to raise this issue with their MP.

[Rangers52 in reply to MissKegs]

I was on ropinirole but didn't last a week as it made my rls worse I've now been on pregabalin for a week and have had 2 better nights, it's not completely gone but it's better than it was

[Rangers52 in reply to MissKegs]

Have you tried pregabalin? I've been on it a week now and have noticed a slight benefit from it

[SueJohnson in reply to MissKegs]

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. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Some have used kratom or cannabis temporarily to help. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) 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. 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 split the doses with 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. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." 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. 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, foods that cause inflammation, ice cream, eating late at night, 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, 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.

[trasimeno]

I am still getting Ropinarole but the local pharmacy is now struggling to get it. I believe Ropinarole is being discontinued at some point and I guess existing supplies will eventually dry up. I am suffering, as expected, from a degree of augmentation but on average take 2.5 mg every night. I will at some point need to move to Gabapentin but I am not looking forward to the process of weaning myself off Ropinarole, so I have continued to take Ropinarole while stocks still exist.

[SueJohnson]

It's a shame you didn't heed my advice a year ago to avoid letting your doctor prescribe a dopamine agonist like ropinirole so let me explain why I didn't advise it. Up to 70% of people on it will eventually suffer from augmentation and the longer you are on it the harder it will be to come off it - just put augmentation into the search box above to see the experiences of others suffering from it. and there is the danger then that the first line medicines now advised won't work because you have damaged your dopamine receptors.

So you have 2 choices. 1) stay on it and switch to pramipexole another dopamine agonist temporarily or permanently. Tell me how much you are taking and I can give you the equivalent amount of pramipexole.

If you do so be aware of the the signs of augmentation which 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.

2) Take this opportunity to come off it and switch to gabapentin or pregabalin which is the first line treatment for RLS. If you decide to do this see my reply to MissKegs above as to how to do it.

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...

Did you ever have your ferritin checked?