Does Ropinerole work?: Hello friends... - Restless Legs Syn...

Restless Legs Syndrome

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Does Ropinerole work?

Jumpey profile image
18 Replies

Hello friends,

I am considering taking Ropinerole for the RLS I have had in my legs and sometimes arms for over 12 years. Please can anyone share their experience of the pros , cons and side effects of this drug. Cheers.

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Jumpey profile image
Jumpey
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18 Replies
nightdancer profile image
nightdancer

Hi, well the one thing we DO know that what works for one person does not always work for the next. With meds for RLS there is no one drug or class of drugs that work for all RLSer's. I, myself, cannot take the dopamine meds because of the side effects and plus they just do not work for me. Some can take it with no issues. The best place to look up side effects is rxlist.com That is my favorite web site, anyway, because it is very detailed. One thing we always have to do is to ask questions and do our research before we get to the doctor's office. It is all trial and error. There are short acting forms of Ropinerole and long acting versions that are time released. Max dose of the short acting form is 4 mgs for a person with RLS. Parkinson's doses are much higher and not appropriate for RLS. also see. rlshelp.org, the treatment page, based out of the US. Are you in the UK or US? ;) Some meds are not available in both countries, but the ropinerole is.

Gonzo123 profile image
Gonzo123

Ropinirole slow release works for me. I take 4mg at midday and the 2mg at about 5pm. This combination seems the best treatment I have had so far. The specialist I saw stated that 4mg a day can be increased and that has been the case for me. So far I haven't had any side effects.

Janet10 profile image
Janet10

I take Ropinirole - 2- 4 mg in total. I take 1mg at about 5pm - 1mg at 7pm and then the remaining 1 or 2 mg at about 9pm depending on how I'm feeling. If I can feel the twitching in my back and legs jingling after the first two tablets I'll take the higher dose. It sort of works. I would be in a dreadful state without it but I'm not completely symptom free and do get some really bad nights followed by some ok nights and day time symptoms too. I am cautious about taking more than 4mg in case it makes the rls worse as I've heard it can - but reading your post Gonzo it seems that it may be ok to increase it.

The rls is bearable on this dose but there is room for improvement. I wouldn't even think about not taking it as I know how bad things are without it. My worry about all these drugs is how hard it is to do without them once you start taking them. I know I'm completely dependent on the Ropinirole.. I don't know if my symptoms are worse now because I'm older or if it's because| I'm taking Dopamine. Missing a dose is just not an option now. It's worth a try Jumpy because the misery of rls is awful. As Nightdancer says every one is different - I had instant relief from just 1mg when I first started on Ropinirole about 6 years ago and that was bliss, I'm interested in the side effects you experienced Nightdancer - could you tell me about them? It's really worth talking it all through with a sympathetic GP or Consultant Jumpy though first. I really hope you have a good Doctor - I have found I've needed to talk at length in order to cope with everything.

in reply to Janet10

My opinion for what its worth, is the more you increase the dosage of ANY dopamine agonists, it works for a while then stops, its called augmentation. Yes, your body gets used to the dopamine, so missing a dose, your dopamine receptors object. If you google augmentation and RLS you will get loads of info about it. Yes, RLS does get worse for most of us as we get older, but augmentation plays a big part with the dopamine meds.

Bettyboop45 profile image
Bettyboop45

Hi I've just started taking them as my gaberpetain stop working so I now have the two , doc started me off on .25g for 2 nights then .50g and so far so good

nightdancer profile image
nightdancer

My side effects with ropinerole were, to be perfectly frank, basically projectile vomiting for 3 months. I stayed on them so I could say I had given them a good go. Lost all the weight I gained with the gabapentin though! ;) Mirapex was not quite so bad, BUT neither of them helped my RLS. I did not get the daytime sleepiness, that is the most common side effect in most RLSer's.

bvlgari profile image
bvlgari

I have been on ropinerole for 1 yr starting on a low dose I had to increase slowly as I felt so nauseous after taking them so always eat something They have helped my Rls and I will continue taking them, I still get bad nights and days but it's better than it was before.x

Cajunfilly profile image
Cajunfilly

It takes two hours for the Ropinerole to work and it lasts for four hours. My sleep doctor initially started me on two, low dosage pills per evening. I took one two hours before bed and one when I went to bed. They make me very sleepy and did well MOST of the time IF I stick to the schedule and avoid caffeine. Recently, I had to increase the second dosage to one and a half pills with the doctor's consent. Two pills were too much for the second dose--I was too drowsy in the morning. My doctor will not allow me to take Ropinerole during the day since it does cause drowsiness. I have trouble in the afternoons in that I can't ride in a car for more than 40 minutes before RLS sets in. I am finding that magnesium or 2 Hawthorne Berry capsules are working much better than the low dosage of Gabapentin that I was taking. Best wishes.

Gonzo123 profile image
Gonzo123

If you use the slow release it has the effect for 24 hours, well it does on me.

Jumpey profile image
Jumpey

Thank you so much to everyone for responding to my question about Ropinerole. It's been very helpful and given me a lot to think about. I'm also interested on the idea of taking Magnesium supplements. How much is an effective dose?

ookla profile image
ookla in reply to Jumpey

To echo what some others have said, ropinerole seems destined to sooner or later (in my case, it was immediate) cause augmentation (make RLS symptoms worse). Some side effects are headaches and sleepiness and, although rare, impulse control problems. I don't recommend the dopamine agonists. That being said, we're all different and some people can get good relief from them for many years. As for magnesium supplements, I tried those and got no relief. I strongly suspect that anyone getting any benefit from them is due to a placebo affect. I hope you find what works for you. Good luck!

P.S. I tried to resist, but I can't. In my opinion, tramadol is the best way to go.

in reply to ookla

some of us have a bad reaction to tramadol, i know i do, it makes me vomit as soon as i take it

ookla profile image
ookla in reply to

That happens to me with vicodin, codein, darvocet, etc. I'm actually surprised I was able to take tramadol. It gives me sleep apnea, though. It's like a cheap knock off Twilight Zone episode - the only relief for my RLS is something that'll make me vomit it up right away or fall asleep any time I sit down for more than five minutes (including driving).

Jumpey profile image
Jumpey in reply to ookla

Hi Ookla,

Thanks for your help.I just wondered whether you have any side effects from the tramadol and how long you have been taking it?

ookla profile image
ookla in reply to Jumpey

Always happy to help. Unfortunately, I did have side effects from the tramadol. I was taking 100 mg before bed for about 6 months and it started giving me sleep apnea. The sleep apnea caused a lot of problems for me. It made me so sleepy during the day that I would get sleep attacks whenever I was sitting for more than five minutes. It became dangerous to drive, so I had to stop taking it. Which is most unfortunate for me since it's the only thing I've found to get relief. I hope you have better luck.

P.S. Some people can't take narcotis and either vomit right away or get too "high" or build up a tolerance too fast and have to keep increasing the dose (I think I was starting down that path).

Jumpey profile image
Jumpey

Cheers for the response about the Magnesium. I'm fairly convinced that Ropinerole is not for me based on the feedback I've received.I'm considering Tramadol- what's the best dosage?

Jumpey profile image
Jumpey

Thanks very much for the clarification. I can't help thinking I won't take anything at all!!!

genny profile image
genny

If your legs AND your arms have rls for heaven sake try the Gabapentin. How can you stand it?

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