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

Seth....I recommend that you Wean-Off any type of dopamine agonist "VERY SLOWLY"... Stopping any of these dopamine agonist medications too rapidly can produce some long term, nasty withdrawal symptoms referred to as "DAWS" dopamine agonist withdrawal syndrome...just read through my post under Augmentation..Reversing Restless Leg Syndrome....

Seth,
I too have had RLS all my adult life and am in my 60's. I think I even had undiagnosed RLS as a child. I have not used pramiprexole, but a few years I augmented on 3 mg ropinirole after taking it for over 15 years. I had to taper off for a drug holiday. It is no fun, plan to be awake and miserable for days. My doc wasn't much help and doesn't prescribe opioids for withdrawal symptoms as some have suggested. IMO: taper yes, but don't drag it out too long. I took about a week to taper, then a couple weeks of no drugs. At that time the RLS Foundation had a paper on drug holidays that I followed.

I started back on 0.5 mg ropinirole for a year and currently take 1 mg. But after reading the latest information linked in another thread [viewtopic.php?p=111540#p111540] I am seeking to get off the DA drugs completely. Wish me luck. DA's have never been the perfect answer, but gabapentin and pregabalin have never worked for me.

Chris

Welcome, Seth. You've received some good advice, including Steve's reply in the Just Joined forum. Truly it's a balancing act - you don't want to stop the DA so fast that you get DAWS, but you don't want to prolong the agony any longer than you have to. I tend toward the "get it over quickly" method, but one of the other moderators, polar bear, tapered over months very slowly without the dreaded worsening of symptoms.

If you do have to go thru withdrawal without opioid assistance, the thing to remember - and it's hard to do in the middle of the torture - is that it will end. The worst of it is usually about 3 days, during which there is very little sleep, and very little peace. Then you start to see the light at the end of the tunnel, and if you can get thru the next 2 or 3 days, you've done it.

But you are lucky to have a doctor who actually knows the latest recommendations, and who understands that pramipexole is hurting you. Best of luck with this process! Let us know how you're making out and what path you ended up on.

As mentioned by badnights i weaned off Ropinerole over many months. Ten months to be exact. I was at that time taking 5 mg ropinerole daily which was an appallingly high dose. I reduced by a very small amount each week, sometimes every two weeks. Take note that at the same time i was also taking pregabalin and cocodamol. The pregabalin was initially prescribed for neuropathy in my feet and legs and had the benefit of helping rls. The cocodamol and the pregabalin were slowly increased as the ropinerole was decreased. I ended up taking the daily max of pregabalin and cocodamol when i came off the ropinerole. It was a very long journey but had the benefit that i did not suffer from any severe withdrawal symptoms. Im unaware of anyone else doing it this way but i had tried twice previously without successt to come off the ropinerole. The day i became ropinerole was wonderful. I'd done it.

I wish you good luck.