Restless Legs Syndrome (RLS) Discussion Board

My new primary care doctor refuses to prescribe any more ropinirole for me. She says she is afraid of side effects. I've been on it since 2014 and haven't noticed any and it works well. She says I should go to a "specialist" - with a higher co-pay. I think I need a new primary care doctor.

Your doctor may be familiar with the eventual "side effect" of augmentation. Augmentation can occur with the dopamine agonists (ropinirole, pramipexole and rotigatine). What happens is that the medication stops working as intended and starts to make your RLS symptoms even worse. Quitting can be very difficult because the withdrawal from a dopamine agonist often means going for almost a week with zero sleep, not even short naps. The only way to get avoid this withdrawal is the use of an opioid, which many doctors are afraid to prescribe these days.

So, your doctor may actually be correct, but she should have told you more about her reasoning than she did.

Yes, fear of augmentation by the doctor was what I thought of also, as Rustsmith has said. It would have been better if doctor had explained a little more regarding her decision. Is she now at a loss regarding treatment, hence her suggestion that you should now see a specialist. If she is no longer prescribing Ropinerole how is she suggesting you manage the withdrawal.

Has she ever mentioned using the anti seizure drugs such as gabapentin. These don't always work for some people but there is the possibility that it would. However, you would have to first get off your Ropinerole enduring the very difficult withdrawal period, before trying the likes of gabapentin. Often gabapentin is used together with another medication, making a cocktail so that the symptoms are tackled from more than one angle.

If you think your doctor would be willing to work with you and try other types of drugs there is a book which is excellent for doctor guidance.
This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. It is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

I would ask her why and ask her what she suggests instead. if you will refer you to someone who is more knowledgeable, that might be a good thing. Many primary care docs do not have the experience they need to deal with the potential issues treating RLS.

As you noted, you've been stable since 2014. If YOU know what to look for, you could consider a new PC and watch for the symptoms of augmentation. Most recently, doctors are thinking that the vast majority of people taking ropinerole or pramipexole will augment, it's just a question of when. The average is around 18 months, if I remember correctly, but some people take them 5 to 10 years without issue.

Are you already off the med? Not sure what dosage you are taking, but if you were on a higher dose, and I'm thinking especially since you've been on it so long, I would hope there would be a weaning instead of cold turkey. My cold turkey stop from a higher dose turned out to be problematic. Not everyone has problems, but better safe than sorry.

Find a new GP. You can't hardly find one that does not list RLS as a specialty they treat. That does not mean they know much about it but provide basic care like Ropinirole, Mirapex, Gabapentin. I did not do well on Ropinirole or its extended release, extended price tag cousin, but if you are doing well the relief may last many years. Or not. The options after DAs are more difficult, more insulting at the pharmacist or even not available.

I would take it as a good sign that she won;t raise the dose. I would also describe to her why you feel you need a dose increase - what is happening to you? Does the current dose not cover the symptoms? Have the symptoms been getting worse? Your symptoms might already be augmented by the ropinirole.