Restless Legs Syndrome (RLS) Discussion Board

Ropinerole has stopped working through the night for me - even doubling my dose - so my doctor has switched me to Horizant. I'm still taking a low dose of Ropinirole (.5) for 2 nights before stopping it. I'm afraid of the withdrawal. My doctor said it won't be a problem but I really don't know if he knows. Has anyone had experience with this?

Last year I switched from ropinirole to the Neupro patch for two weeks and had no trouble. But after the 2 weeks on the patch, (returning to the ropinirole) I was in agony for 3 nights.

You didn't give us any details about how much ropinirole you were taking or for how long you have been on dopamine agonists in general.

If you have been on it for an extended period of time, you are probably correct in your assumption that your doctor probably does not have an idea of what it is like to get off of ropinerole . Judging from your comment that it stopped working even when you doubled the dose and that you had switched to Neupro and back last year, it sounds a lot like you are augmenting on the dopamine agonists (take a look at the Augmentation forum for more info on that).

For most people, Horizant is not going to be strong enough to cover the problems that you will have getting off of a dopamine agonist when you are augmented. There are two schools of thought on how to get off of a dopamine agonist. One side recommends going cold turkey, which involves NO sleep for four to five days followed by gradually increasing amounts of sleep until your return to your baseline condition somewhere between 10 and 28 days. The other side recommends the use of an opiate to cover the dopamine withdrawal symptoms. I personally started to transition off of a dopamine agonist two weeks ago with the help of an opiate. I felt better within an hour of the first dose and have been getting more sleep than I was while I was augmenting.

So, it sounds like you either need to educate your doctor on the issues associated with augmentation due to dopamine agonists or else you need to find a doctor who is familiar with treating patients such as yourself. If you think your doctor might be willing to learn, a great resource that you could provide him/her is the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Henning. The book is available from Amazon for about $25 and the authors are among the world's experts on RLS. The book is also written in such a way that it can be understood by doctors and their patients.

Why did you switch back from Neupro to ropirinole?

I don't have experience w Horizant, but I take gabapentin, which is similar to Horizant, and it is nowhere near strong enough to control my RLS alone.

Even though it sounds like you are augmenting on ropirinole, it is possible that you can successfully switch to Neupro, though for some people, augmenting with ropirinole may increase the risk of having a poor result with Neupro.

I only take one .25mg ropinerole each night and if I forget or am not in a position to take it (such as being out for the evening and forgetting to bring it with me) I'm in agony until a few hours after I finally take it.

Thanks for the advice and responses. I made it through coming off of ropinirole without much trouble thank goodness. I was taking .5 of ropinirole so not a high dose which I'm sure helped. (Actually I was taking 1 mg but only for 4 days prior to stopping.) My dr wanted me to double the dose and then double the dose again (to 2 mg) but when I was taking 1 mg it wasn't any more effective than at .5 so that was when he switched me to Horizant. The ropinirole also made me very nauseous in the mornings. I had tried the Neupro patch last year for 2 weeks just bc my doctor had some samples and wanted me to try it and it was somewhat better than the ropinirole during the day, but it was very expensive so I figured I'd make due with the ropinirole. Then it stopped working very well. I really did not want to take another DA medication given the agony I'd had coming off of only 2 weeks of Neupro. Horizon had been very effective for me so far. It's also very expensive for me ($4000/yr) but at this point it's a quality of life issue. BTW Nuepro also made me very forgetful which was alarming. Does anyone have experience w being on Horizant long term and it's effectiveness?

Yankiwi wrote:I only take one .25mg ropinerole each night and if I forget or am not in a position to take it (such as being out for the evening and forgetting to bring it with me) I'm in agony until a few hours after I finally take it.

My dr said to never take more of ropinirole during the night bc it takes 2 hours to be effective. I've tried doing it too and it just took too long to work and made it groggy the next day.

With regard to the comment regarding not taking ropinerole during the night.... I have symptoms 24/7 and take a bedtime dose of medication at 9pm.

Like most of us I don't sleep well. I take a small dose of ropinerole at approx 2am and again at 5am. Without these nocturnal dosages I am writhing in the bed from perhaps 4am onwards with no option but to get up. Perhaps only having had 2 or 3 or 4 hours sleep.

We are all very different and react to our medication differently, cope with (non) sleeping issues and get through as best we can.
Fortunately I've never had any hangover effect to contend with.

Polar Bear wrote:With regard to the comment regarding not taking ropinerole during the night.... I have symptoms 24/7 and take a bedtime dose of medication at 9pm.

Like most of us I don't sleep well. I take a small dose of ropinerole at approx 2am and again at 5am. Without these nocturnal dosages I am writhing in the bed from perhaps 4am onwards with no option but to get up. Perhaps only having had 2 or 3 or 4 hours sleep.

We are all very different and react to our medication differently, cope with (non) sleeping issues and get through as best we can.
Fortunately I've never had any hangover effect to contend with.

Very similar to me - and well said, PB!