Restless Legs Syndrome (RLS) Discussion Board

Hi, Stopped Ropinirole( .75mg) in May this year after 20 Months, managing now with Pregabalin/Kratom, not ideal or consistent, on two occasions in the last Month after a run of not very good nights I`ve resorted to .5mg of Ropinirole, worked like a charm. Does anyone have any thoughts or experience in using Ropinirole in this way, thank you

I augmented on mirapex, similar to ropinirole. After being off it for a few months I restarted at extremely low dose with good results (combined with Kratom and Gabapentin). I would try 0.25 mg of requip and see if it works, if it does I would try 0.125 mg. The key to using dopamine agonists, especially post augmentation, is to keep the dose extremely low.

I have been off ropinerole for about six months and my symptoms are controlled by Codeine and Lyrica. I get some breakthrough but it’s not dreadful. Sometimes it is difficult to tell if it is RLS or the neuropathy. Walking for a time usually resolved but just not always. I use Kratom to help at these times.

I do have in mind that a very small dose of Ropinerole (not taken regularly) would probably help if I was ever desperate. However, I am keeping that in reserve.

Thank you for responding, it`s good to think that there is an option for the very occasional respite, I find Kratom does help but the dose is crucial, too much and yes is calms the legs but keeps me awake, still looking for the right balance.

The meds that work the best for sleep for RLS are gabapentin (and cousins, Lyrica and Horizant) and THC (medical marijuana). There are a few that get better sleep with CBD, but most on this board (me included) say CBD doesn't help their sleep. Regular sleeping meds rarely help RLS sleep problems.

I augmented severely - and I use a DA regularly now. I always take regular breaks and keep my ferritin as high as I can. Been doing this over ten years with no issues.

I am in process of transitioning from ropinerole to pregabalin as recommended by my RLS specialist at Mayo Clinic. I'm wondering how much pregabalin most people take?

I was on 2mg time-released ropinerole at bedtime and used .5 to 1.0 mg of regular ropinerole as needed for evening breakthrough. Now I'm on just 75 mg of pregabalin, have dropped the time-released ropinerole and just use the .5 mg tablets as needed in the evening. The pregabalin makes me very drowsy/groggy and I've been sleeping better than I have in years! But now I need to go the next step, increasing the level of pregabalin and, hopefully, eliminating all ropinerole. But I'm worried because I'm afraid that more pregabalin will make it hard for me to wake up and get going in the morning.

Is it possible to take enough pregabalin at bedtime to control symptoms for 24 hours without the morning side-effects?

Thanks for any insight!

I don't have any experience with pregabalin, so I cannot help you with your questions that are specifically about it.

What I can do is tell you that you should get off of the ropinerole before worrying about our pregabalin dose (if your goal is to completely off of ropinerole as opposed to reducing the dose to a low value and then going with a combination of ropinerole and pregabalin). When you go from a low dose or ropinerole to zero, you are going to have a rough time of it for about a week and pregabalin isn't strong enough to cover the ropinerole withdrawal. During the days following completely getting off of ropinerole, you will not get any sleep (not even short naps) unless your doctor provides you with a low dose opioid to cover the ropinerole withdrawal symptoms. Your RLS will also be the worst that you have ever experienced. After 5 to 7 days, you will start to be able to get some sleep with the amount increasing each day.

So, my suggestion is to take the step of stopping ropinerole and then worry about your pregabalin dose in a few weeks when you start to return to your new normal of pregabalin, whatever that is.

Thanks for sharing your insight, Steve. The good news is that pregabalin is great for sleep! I usually sleep 6 to 7 hours at the most. Now I am sleeping 8+ hours a night. And its really good sleep. Not the shallow sleep that I was used to during decades of successful treatment with ropinerole. I'm hoping that eventually my evening breakthrough symptoms (which I think are augmentation related) will disappear. It's only been in the last year or so that I've had any breakthrough to speak of. So far, I'm really hopeful about the pregabalin.