Restless Legs Syndrome (RLS) Discussion Board

I am currently on 400 mg of ropinirole and will need to withdraw from it when I start my new medicine. What are your suggestions for how much to reduce at a time and how long to stay at that reduced dose before reducing again?

Are you taking 400mg or 4mg? The max recommended for ropinerole is 4mg.

And what is the new medication? That will also be important to know.

Whoops. Obviously I meant 4 mg. As far as the new medicine, I see my doctor on Dec 17th so won't know until then, but I am guessing it will probably be gabapentin enacarbil (Horizant).

The type of new medicine is very important. Horizant along with gabapentin and Lyrica are not strong enough to cover withdrawal from ropinerole. The only type of med that can cover DA withdrawal is an opioid. Some doctors insist that a patient taper and then quit a DA without the use of an opioid because they say that this just draws out the torture. Personally, I would disagree and point out that they have not gone through DA withdrawal. If you can get an opioid, you will need about 5 days worth to stem the worst of the withdrawal. You can then come off of the opioid, which is far easier.

If you have to quit cold turkey without an opioid, then you can expect that as you taper, the insomnia will get worse as well as worsening RLS. When you finally quit, you can expect at least five days of no sleep, absolutely None! You will also experience the worst RLS of your life. After a week, you will gradually improve with gradually increasing amounts of sleep. Most return to whatever their "normal" RLS baseline is like between 2 and 4 weeks.

It is also important that you NOT take any type of sleep med during the withdrawal period. The sleep med will not allow you any sleep, but will reduce your ability to walk around. If you take a sleep med, you are at high risk of falling and severely injuring yourself one night. Another tip is to hand any left over ropinerole to a family member and ask them to hide it from you if you go cold turkey. If you don't, you will weaken around night 4 and take one just to get a little bit of relief. If you do that, the process starts all over again.

I have heard from folks on the HealthUnlocked discussion group that one should drop the dose by 25 mg every two weeks. This was what I was looking for, as I don't want to take an opioid even for 5 days and certainly am not going to quit cold turkey.

There are some people who can get off the dopamine agonist (ropinirole in this case) by very slow gradual taper like you are proposing. For some reason that is not what usually happens. As far as the torture of cold turkey, Steve has painted a grim, but unfortunately, all to real scene. I did it, but it was indeed the worst experience of my life... But I got off the med and stopped the aumentation problems.

If I were to go the opioid route - would I quit the ropinirole as I start the opioid? Would I have any withdrawal effects when taking the opioid and after stopping it?

If you go the opioid route, you can quit ropinerole from a low dose level as soon as you start the opioid. As for opioid withdrawal, you will experience a little bit of discomfort, but not the stereotypical sitting and shaking with sweats for many hours. My experience has been mild stomach upset for a few hours along with a general feeling of malaise, sort of the feeling like I was in the initial stages of getting the flu. But that only lasted about half of a day and then I was fine.

But I am not stopping from a low dose. I am taking 4 mg of ropinirole. Would I still be able to quit ropinirole as I start the opiod?

I reduced off Ropinerole by a very slow taper, starting at 5mg which was way way too high a daily dose. I was also taking Codeine Phosphate. Was definitely augmented.
As I reduced the Ropinerole I slowly added Pregabalin, still taking the Codeine Phosphate. The Pregabalin was also very useful as it treated my neuropathy in my feet and lower legs.
I did order Kratom but only took quite low doses and I'm not sure just how much it helped.

My reduction was almost painless but it was indeed slow, taking about 10 months. I would reduce by .25mg and let it sit for maybe two weeks. When I saw I was ok at that I then went down another .25mg. At no time did I increase my Codeine dosage, this was already almost at the daily max. By the time I was down to about .5mg I was also taking Pregabalin 200mg x twice daily.
I continued on my (never increased) Codeine and my Pregablin 200mg morning and evening. I do still have Kratom which I used whilst reducing but never in high doses. I would use it now very occasionally for breakthrough during the night. However, at present I use it so little that I'm of a mind not to re-order when my current supply is finished. It can always be ordered and arrives very quickly.

Most people taper off Ropinerole over a few weeks, or if on a low dose they go cold turkey. I was fearful of cold turkey, hence the slow taper. Couldn't do cold turkey at a dose of 5mg anyway. I think it was at .5mg that I stopped completely.

Whichever path you choose to reduce, you will never regret coming off the ropinerole. I'd been taking it for over 15 years and at a high dose most of that time. The joy when I eventually stopped was immeasurable. I was so proud of myself.

I have never regretted that reduction journey, every reduction was a prize.

I never took ropinerole, but was taking 0.75 to 1mg of pramipexole when I switched to methadone. For comparison, the FDA recommended max of pramipexole for RLS is 0.5mg. When I switched, I simply took my first "starter" 5mg dose of methadone and dropped from 0.75mg to 0.25mg at the same time and immediately felt better, as in no augmentation. I was supposed to titrate my methadone dose up to 10mg, but turned out to be too much for me, so I returned to 5mg. Later, I reduced my pramipexole to 0.125mg (half of a pill) and then completely stopped for a while without too many problems compared to stopping cold turkey. However, I then found that 5mg methadone wasn't enough to manage my RLS and that 7.5mg was too much, so I added the 0.125mg pramipexole back and have stayed there for a year without many problems.

Do I have to wait until I am off ropinirole to start extended release gabepentin?

You do not need to wait, the two meds are completely compatible and can be taken together. The only thing is that the gabapentin (Horizant) benefits will be completely overwhelmed by the ropinerole reductions, so you will not get much benefit from the gabapentin (Horizant) until well after you have stopped the ropinerole and are starting to recover from the withdrawal effects.

And the danger is that you might end up taking a very high dose of gabapentin encarbil to try to control symptoms during withdrawal. If the Horizant or plain gabapentin is going to give you side effects, it will give you the worst ones when the dose is high. It also might not be clear that you can lower your dose - or when to - once the withdrawal is over, since it ends gradually.

Would your doctor consider a short-term prescription of an opioid? Or do you prefer not to take them for other reasons? Most people don't feel any withdrawal after taking them for only 5-10 days.