I’ve been on ropinirole for about 13 years with a fair amount of success, so thought my feedback to the group may be of value.
My RLS is relatively mild compared to some: I can’t manage without medication, but I’ve been able to keep it under control. Things I have learned (in no particular order):
1). Don’t augment. Far better to suffer some manageable symptoms than lose the use of the meds long term.
2). I can have chocolate, caffeine and alcohol, but be prepared to pay for it if I have it within four hours of going to sleep.
3). The meds are only really effective 1-3 hours after taking them. If I fall asleep within an hour then I’ll have symptoms. The problem with this is that the pills start making me drowsy about 30 mins after taking them.
4). Don’t eat anything half an hour before or at all after taking the pill.
5). Flex the dose. I always take 0.5mg. If I start having symptoms, I take more, never more than 1.5mg. I find that the RLS ebbs and flows over time, so I may have to take more than 0.5mg for a few days running, but always ensure to drop back down again.
6). Staying active in the evening helps. Doesn’t have to be anything strenuous.
7). If I’m having symptoms then I try get an adrenaline / dopamine kick, which can sometimes stop them in their tracks temporarily (long enough to get to sleep). I sometimes watch my (racing driver) son’s races back, or possibly seek another natural high. I’m happily married, let’s leave it at that.
8). On the subject of, having a separate bed to go (be evicted) to is very useful in maintaining the “happily” bit. Actually probably the “married” bit too…
9). If I spend time on a train or a plane then I know I’m going to be in trouble. I can walk around all day but for some reason trains in particular trigger an attack later on.
10). Baths help, cold bedrooms help. I’ve tried cold water which feels intuitively like it should work, but relief passes relatively quickly. For me a hot bath until the worst is past is better.
11). There is no feeling of relief like that moment when the RLS attack drains away. Use it for encouragement.
12). Avoid the Teva brand of ropinirole like the plague, it gives me nasty feverish / nausea side effects
13). No two people’s RLS experiences are the same. It’s a bastard condition that’s uniquely tortuous while not leaving any obvious scars. However, the brain is the key: it is what controls the nervous and lymphatic systems, so is my greatest weapon in managing the condition.
I hope that this post is in some way encouraging and perhaps gives people that notion that they can take a little more control over their RLS if nothing else. I know that while I feel it in my legs it’s actually literally all in my mind, so considering my whole self is more effective than trying to just kill the ants that are running up and down under my skin.
Have a good day and a symptom-free evening everyone.
David.
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OldHollow
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Why not get off the ropinirole and switch to gabapentin or pregabalin which can completely manage your symptoms and you won't need to worry about augmentation? And the longer you are on it the more likely you are to suffer from augmentation and then the first line treatment for RLS won't work.
For trains or flying take a little more of the ropinirole.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 as you found, 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.
I've been taking ROPINEROLE for over 10 years and very sadly have had my life turned upside but not nearly as much as my poor family!
1 in 6 people on ROPINEROLE have or are suffering with ICD in one shape or another as a side effect of ROPINEROLE. [A well documented fact]
It would seem David you are not the 1 in 6 that suffer, lucky for you, very very lucky for you!!
Is anyone else aware that ROPINEROLE at least I believe in the US im certain in Australia is now relegated to 'end of life' scenarios because of how devastatingly dangerous the side effects are for the 1 in 6, [do some research its alarming and scary] It is now 'black boxed' so clinicians ONLY prescribe for 'end of life' circumstances (because the development of ICD's are inconsequential).
I over time ended up taking 2.5mg and have begun with great earnest weaning myself off this drug using pregablin. Last night I took 1.5mg of ROPINEROLE, the lowest dose for a long time and, though early days, glad very glad to say managed an OK night. For me I simply MUST GET OFF THIS DRUG, for me I'd never recommend this for sufferers of RLS for fear they are the 1 in 6!?!
Again happy it's working for you David though I'm not sure how much longer it'll be available in the UK?
Welcome to the forum. You will find lots of help, support and understanding here.
That is terrible and as you mention it occurs much too often.
Unfortunately ropinirole is still prescribed frequently in the US and the UK and elsewhere in the world for RLS.
I'm glad that so far it is going well for you. The usual advice is to come off ropinirole is to 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 or you may be able to reduce more quickly. 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.
Ropinirole and pramipexole 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 it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 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 split the doses with 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. 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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 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.
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