Restless Legs Syndrome (RLS) Discussion Board

Hello all,

Long story short, I was on ropinerole for about 3 years and experienced augmentation. My neurologist moved me off ropinerole completely and prescribed carbidopa-levodopa 50mg-200mg. Within a few weeks, I also experienced augmentation with the levodopa.

About 3 weeks ago, I started working with a sleep doctor who had me get off the carbidopa-levodopa (I went off cold turkey 21 days ago) and have been taking gabapentin and lyrica since (I am now on 900mg of gabapentin a night and 150mg of lyrica). I was also given 10 5mg oxycodone which are now gone.

I am 20 nights out and am still dealing with severe RLS symptoms, mostly at night but also many afternoons if I attempt to lie down for more than 20 minutes.

I am wondering if anyone else had augmentation that lasted this long? When I started this process, my doctor said give it 7 to 10 days and I should be back to my baseline RLS but 10 days have come and gone and I'm starting to think this is never going to end.

I'll also add that my iron is currently high (around 133ug for total iron and 433ng ferratin).

After three weeks, you should be returning to your post-augmentation baseline RLS.

It is very possible that the gabapentin and Lyrica simply don't work for you. They help about 65% of us, but that means that 35% of us don't get enough benefit from them to control the symptoms.

Unfortunately, that could mean that you are going to join the large numbers of us who have to depend upon low dose opioids to manage our RLS.

There was a paper published at the Mayo Clinic a few years ago that discusses the use of opioids to treat Refractory (post augmentation) RLS. You may want to share this with your sleep doctor, who may still not be willing to prescribe opioids. That is the battle for many of us, finding a doctor who has the courage to prescribe the medication that we need to maintain our sanity. https://www.mayoclinicproceedings.org/a ... X/fulltext

Sharkey,
I am just a few steps ahead of you in the process. I was on Pramapexole (Mirapex) for about 15 years working up to a dose of 3.75mg per day and experiencing horrible augmentation. Started to see a new Dr that recognized my Pram dose was way too high and probably causing the augmentation, and decided I needed to ween off and try something new. I did a slow ween, and had to revert back to Prama a couple times to save my sanity, took me just over 2.5 months. Currently at just about a month without Pramapexole and just now getting back to my baseline original RLS levels. Trying to find the right balance of Horizant and Gabapenton to control my RLS, but also having to use Tramadol and Xanax to help out. It is a rough road for sure and I know just how bad it is, but stick it through, it gets better for sure.
Martin

Sharkey1337 wrote:I am wondering if anyone else had augmentation that lasted this long? When I started this process, my doctor said give it 7 to 10 days and I should be back to my baseline RLS but 10 days have come and gone and I'm starting to think this is never going to end.

I'll also add that my iron is currently high (around 133ug for total iron and 433ng ferratin).

It would seem that your symptoms are too strong for the medication you're on. Whether someone calls it the tail end of augmentation or just your new baseline is irrelevant to the fact that your medication is not covering it off. You should ask your doctor what he can do about it.

Be sure to explain how it's impacting your life, for example, "I sleep only 3-5 hr per night and even then, I don't feel refreshed, so I'm making mistakes at work, I can't focus, I can't make decisions, and my social life doesn't even exist anymore, I have to say no to all invitations because my legs are always going nuts and not only can't I sit still, I can't concentrate on anything" - or whatever fits your circumstances.

It's your doctor's job to listen and thereby understand that you are suffering, but it's your job is to describe that suffering.

Then it's your doctor's job to relieve your suffering. Don't leave the appointment without an answer to the question " how will you stop my suffering" But say it nicer than that. I'm falling asleep so I can't think of replacement words.