I have been on Ropinirole for 1 1/2 years. It was a miracle drug for me until about 3 months ago. My PCP said to double the dose. But that hasn’t been helping. I now get flairs during the day (never had them during the day before), It takes a long time to work (an hour or more) while it used to be 15 minutes) and it only helps partially. I have to now also use a heating pad. Evenings I have flairs every night. The Rx takes a long time to work. And again only partially. Can someone recommend a neurologist in or near Easton Maryland USA. Annapolis Maryland would also work.
My PCP just increased Ropinirole. I’m... - Restless Legs Syn...
My PCP just increased Ropinirole. I’m pretty sure I’m in augmentation
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You are experiencing augmentation.
Please read up most any of Sue Johnson's replies (except her last post😝💚) to many similar questions.
As Madlegs says and as you suspect - augmentation. How much ropinirole are you now on?
See the DA withdrawal paper here:
rls-uk.org/_files/ugd/b0a19...
Or see SueJohnson 's detailed advice, which I see that she gave you in Reply to your first Post a couple of weeks ago.
Too many doctors and neurologists are not up-to-date on RLS, still prescribe dopamine agonists and don't understand augmentation or how slowly one needs to taper off. If you find a neurologist yourself, you need to be certain that they follow the Mayo Algorithm:
mayoclinicproceedings.org/a...
If they say they don't, or if they prevaricate when asked, don't use them!
I know that this is further than you want to go, but there is an RLS Foundation certified Quality Care Centre in Baltimore:
Johns Hopkins Center for Restless Legs Syndrome, 5501 Hopkins Bayview Circle, Baltimore, MD 21224
Phone: (410) 550-8528
Certified Healthcare Providers: Christopher J. Earley, MB, BCH, PhD, FRCPI (QCC Director)
seeing MD residents only
hopkinsmedicine.org/neurolo...
I believe from recent posts that you'd need to get an appointment with Dr Earley himself, as apparently he's now the only doctor there now associated with the QCC.
I’m on 4mg once nightly up from 2mg nightly and .50 mg if I get a flair up during the day
I'm afraid that it's going to take you quite a long time to taper slowly off the ropinirole and to move on to gabapentin, pregabalin or a low dose opioid. Do go back and read Sue's original reply to your first Post:
healthunlocked.com/rlsuk/po...
Whatever you do, don't let a doctor or neurologist switch you to another dopamine agonist - pramipexole (Mirapex) or rotigotine (Neupro) - as you'll augment again, more quickly, on one of those.
On Chris's reply do not schedule an appointment with anybody other than Dr Early as they are not knowledgeable. If you can get an appointment, he is one of the top experts in the world. You would only probably have to go there once and could probably do telehealth visits after that.