Coming Off Ropinirol

[Chocolate123Lab]

Hello RLS Community

First off, I just want to thank so many of you for the amazing support you offer here. It’s not hyperbolic of me to say you are LIFE SAVERS. I really appreciate the feedback and responses I had to my previous post. 🙏💕🙏

On to my question: I would like to come off Ropinirol and understand it will be a hellish time ahead. I also know this drug needs to be replaced with a non-DA. I would like to go through this with a neurologist who really knows their stuff, and who can guide and educate me (instead of it being the other way around).

I am based in North London, and am wondering if anyone can recommend a London based neurologist or someone I can consult with remotely? I have contacted Dr Jose Thomas in Wales (waiting for a reply) and am wondering if there are one or two more here in London that people have had a good experience with?

I may need to come off HRT, have low thyroid and also am suffering from what is starting to feel like clinical depression (I just can’t seem to do anything these days, even the things I used to enjoy)…so it’s the constellation of health issues and their respective medications that all need consideration.

Many thanks. Time to get this ball rolling

Jane

[Joolsg]

Hi again Jane,All the advice given last month still applies.

Professor Matthew Walker at Queen Sq UCL is the nearest neurologist for you. He is knowledgeable, but, like all neurologists will not be available to help you through withdrawal.

He has a LONG NHS waiting list. Priva he charges around £350 for a consultation.

[Claire_lc]

Hi Jane, I'm also in North London and managed to find off Ropinirole last year. I decided to try Dr Robin Fackrell in Bath, and he seemed very knowledgeable and open to opioid treatment.

He wrote to my GP - I had to move to a practice in South London where Buprenorphine isn't restricted - and they happily wrote a prescription.

I did book in with Prof Walker but was put off by people saying he's hard to get hold of after the first appointment.

Happy to tell you more if you want to DM me.

[Strike26]

hi - whilst coming off Ropinirole can be difficult, that’s not always true. I was on the maximum dose for RLS, and (on the great advice on this site, was switching to Gabapentin) first halved the dose, with no effects, so also halved the time and quickly reduced to zero. Again with no effects. Of course, you must take proper advice but like everything RLS it’s always a case of the individual and their treatment- what works (or doesn’t) for one varies radically. Best of luck.

[Chocolate123Lab in reply to Strike26]

Strike26, thanks so much for your message. That’s great to keep in mind the possibility that things might NOT be so nightmarish coming off this drug. Certainly having adverse withdrawal symptoms is a strong narrative, but it’s good to know it’s not the only one! Much appreciated, Jane