Restless Legs Syndrome (RLS) Discussion Board

Hi Everyone,
I'm Seth from Arizona and have just joined both the RLS Foundation and this discussion board.
I've had RLS most of my adult life, and its severity has increased quite a bit in my 40s when I first started medication. Now I'm almost 63 and have a good neurologist who is helping me. He has recently diagnosed me with sleep apnea, which he thinks will help my RLS. I'm using the CPAP mask, and I think it is helping.

The only RLS related medication I take is pramiprexole. My doctor wants me to start weaning off it because it can lead to augmentation. I had that problem with Ropinerole when I continued to take more and more, and it helped less and less.

I mostly take 1mg of pramiprexole in the evening, sometimes 2mg if I'm having more symptoms and on a rare occassion I'll take 3mg, but that's not often at all.

I'd appreciate some feedback about the best way to reduce the pramiprexole medication. I tried to do cold turkey with Ropinerole when I ran out one night, and I had the most terrible night and morning. Cold turkey is a bad idea for RLS meds, but it's a good idea for a sandwich.
Thanks for reading.
Seth

First off, the FDA max dose for pramipexole is 0.5mg, so you are severely augmented on it As you probably now know, you should not need to switch to another dopamine agonist.

There are two ways to safely get off of pramipexle. The first is to slowly taper your dose. As you taper, your RLS will get worse, both your movement issues and your sleep problems. As the dose goes down, the severity of the issues will get worse. If you take this route, your life will be miserable and it will take about a month after you reach zero before you return to whatever your new baseline RLS is like.

The other route is for your doctor to prescribe a low dose opioid to cover your withdrawal from pramipexole. Once you are off, which takes a week or two, your doctor will then need to taper your opioid dose. However, the question to ask your doctor is, what do you intend to do to treat my RLS once I am off of pramipexole. Switching back to ropinerole or rotigatine just kicks the can down the road a bit further. Most of us who have been where you are today have eventually ended up on a low dose opioid, where we have stayed for years without problems other than regulatory hassles.

There are plenty of Foundation papers that were published in the Mayo Clinic Proceedings about how low dose opioids are the proper treatment for "refractory" RLS (this means you) and also for the proper treatment of RLS. Let us know if you think any of these might help.