ropinirole

I have had restless leg syndrome for 40 years and it gets worse with age.

I have tried so many ways to overcome without medication. accupuncture etc. but gone back on 0.25mg ropinirole 2 at 5pm and 2 at 10pm. dont sleep all night but at least my legs are not jumping!!!!

fortunately I do not suffer side effects.Put off when i read they can be used for parkinsons but what choice do we have? It's only now doctors are recognising this and taking it seriously. Mine anyway.

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  • I worked up to 3mg an hour before bed and now sleep like a log for 6 hours. I have been been on this dose for over two years now and sleep so soundly that I seem to need less sleep than I have needed for years, I guess my deep sleep had been disturbed by my legs jumping even if I did not wake up. Whats wrong with ropinirole if it is just making up for the dopamine that we naturally lack? I still suffer a lot of pain in the early evening when sitting in meetings etc and am reluctant to take ropinirole in case it makes me sleepy if I have to drive home. I note that one lady wrote that she took 1 mg at lunch time and that it helped her till the evening.

  • all Dopamine Agonist meds are used for Parkinsons Disease as we all suffer (allegedly) from lack of dopamine in the brain. I am on 0.25 Ropinorole a night (with my Neupro patch) and the reason we wake up early is because they cause insomnia but at least our legs are not jumping all night !

  • I have not tried Ropinorole before, had rls for about 5 years, looks like this med cools off rls so you can have some rest, I am going to study about it.

    Thanks

  • yeah ive been taking them for about a year and they did help, i had some not so nice side effects but nothing as bad as RLS so i kept at it, then a pal told me about glucosamine sulphate which i asked on this site about and got mixed response but decided to give it a go anyhow...ive been off the ropinarole now for a month, sleep each night and as yet had no further jumping legs ...worked for me and glad to be off the ropinarole but would go back on them if i have to...for the first time in 25 years im sleeping !!! i cant believe how others live...without constant tiredness and lethargy wow its amazing, ive also changed my diet completely and mostly eat an almost vegan diet now , not sure if this is helping but just glad im sleeping ! good luck x

  • hi well i took roprinole I broke through it but the worst thing was it gave me halluncinations. so the doctor put me on mirapex .25 it works so good I cannot believe it and the best thing is I rest every night.Ask your primary see what they say. Good Luck

  • Hello fellow RLS suffers - I am 66yrs young and suffered with RLS for many years. I didn't get medical help until 2008 when I was at the point of suicide. I found a GP willing to help me and find a medication to help me.

    So I have tried mirapexin and it wasn't for me due side effects, tried Nupro patches - just couldn't get on with them. Tried a number of alternative solutions - but for me Ropinirole with clonezpam, works. This my experience so far - Clonezpam is my day time cover, it allows me to drive and watch a film at the cinema and prevents RLS when sitting still for along period.

    Ropinirole, I take 2mg at Lunch time and a further 2mg about 8pm - I can get through the evening OK and sleep at night. Now thing about Ropinirole is that slow release tablets do not work well for me. If I was to take 2mg of slow release every 12hrs I would have bad RLS for 3/4 hrs after each dose. Even taking the Clonezpam cannot help. However, if I take the same daily doseage 'quick release' tablets, split between middayand evening I am OK.

    If you are taking the slow release tablet and it isn't working well for you them you probably need the straight dose - 'quick release'. You can test this for yourself my taking the slow release tablet and crunching up with your teeth - this will release dopamine into your system quickly. If this helps to allivate your RLS them you need to switch to the 'QR' tablet.

    I have two Neuro consultants reviewing my RLS (2nd opinion generated) and they both believe that it is very rare that 1 drug alone will suffice - a combination approach is often the necessary solution but GPs don't have the knowledge to take that approach. So it's important to get referred to a Neuro Consutant who specializes in movement disorders. I was able to find from the NHS web site - which tells you what the Consultants (available via your NHS trust) specialize in - then with your GP's help get referred.

    Life is now as near normal aspossible for my age

  • For some suffers slow release works well, for me they don't, and there isn't a risk of over dosing if you chew the tablets - the doseage isn't altered, just the speed that the tabs work. If the slow release tabs work then you would have no need to have quicker relief. By the way the advice to chew the tablets was given to me by my GP. And it works for me.

    If you have no confidence in your Neuro Consultant seek help from another, at the end of the day it's down to you to get the help you need - get referred to a specialist - I was able to get a 2nd opinion from a Consultant at St Thomas Hosp,in London -who has a clinic at Ashford.

  • Have to agree with you on that one, too, romany. There is a reason why there are slow release tablets and quick release tablets. In the end we have to do what helps us, but proper advice is never chew slow release pills, because that can get you into trouble, with that class of meds and lots of others. It is all different the way we treat RLS, but I have to agree on that one, for safety's sake, that is all. ;)

  • I am going by what the rules are in the US, too, not the UK. :) so, your mileage may vary.

  • I am on 4Microgams of M/R Ropinerol. I'm very lucky I've had no side effects from it, the dose was increased very gradually initially. Being free from the symptoms of RLS is wonderful. Only a fellow sufferer can know the feeling of torture it brings. I still get the odd jerk as I fall asleep, I thinink that's my myoclonic jeks, not sure. For me to be able to get into bed and not anticipate the hell of RLS is amazing. I take my tabs about mid-day and it works for me. It dramatically reduced the RLS, the awful urge to keep moving my legs and the jerks . These were totally different to the RLS, my whole body would jerk, I loooked like I was fitting, but I was totally conscious. every 15 seconds my whole body would spasm. To have relief from this is such a relief. I'm just very grateful something has worked.

  • Thanks. It did not happen over night. I had so many useless trips to my GP. I felt like I was going crazy. How do you explain to someone that your body jerks uncontrollably as soon as you start to fall asleep and before that your cannot keep your legs still. The only relief is to get up and stagger around the house semi comatose from exhaustion. Why are you out in the garden at three inthe morning stretching and kicking your legs, slightly strange behaviour ? Yes, to people that have no idea what your going through. I'm quite sure my family thought I'd lost the plot. Only my partner understood, he would witness what I was going through. I'm not sure which was worse the physical or mental side effects. I would get the jerks during the day. I can remember going to the hospital one day and I felt that they thought I was some sort of ' attention seeker'. Throwing myself around just for the hell of it. It's been a very demoralising experience. I'm just gald that, for the moment, it's under control.

  • Have you considered opioids?

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