Is there an NHS clinic in London that will help me come off Ropinerole?

[Ruffabug]

Is there an NHS clinic in London that will help me come off Ropinerole? My GP has said he will refer me to a neurologist but I would prefer to see someone who specialises in this specific problem.

[cumoneileen]

I have had RLS for over 50 years. As I have got older the worse my RLS got. Over the years I have seen so many specialists. Neuro, vascular, no one has been able to help. I have found going back and fore from ropinerole to pramipexole has helped. Once one stops working go back to the other. That's the only way it works for me. Trial and error.

[Ruffabug in reply to cumoneileen]

Thank you. Interesting!

[Joolsg]

Sadly not. Only one or two neurologists with any knowledge and even they still suggest the Rotigitone patch after patients have augmented on Ropinirole or Pramipexole even though this is not advised by the world experts who co wrote the Mayo algorithm.However, Prof Walker at Queen Sq is one of the better neurologists and will see patients privately then switch them to NHS. The NHS waiting list is longer.

He will help you through withdrawal and will prescribe opioids to deal with withdrawal symptoms.

Many start the process themselves without help as there isn't much experience in the UK

Reduce slowly by 0.25mg every 2 to 3 weeks. Start replacement meds lile pregabalin or gabapentin about a month before the last dose of Ropinirole so youre at full dose ( 1200-1800mg gabapentin or 150-300mg pregabalin) by the time you stop Ropinirole.

Withdrawal will last at least 3 weeks after you stop Ropinirole.

I found cannabis was the best help during withdrawal. You can get a private prescription now in the UK.

[Ruffabug in reply to Joolsg]

Thank you very much for this info. Very helpful.

[SueJohnson]

A couple things to add to Joolsg's response: You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. I always recommend you start with gabapentin instead of pregabalin because you can increase it in smaller doses. (you can always switch later on by dividing the gabapentin dose by 6), I have previously advised you how to take gabapentin so I won't repeat it here. I would definitely advise you to not go up to 1200 to 1800 mg before you are off ropinirole as it will take until you are off ropinirole for several weeks to be fully effective. ((that is not the full dose - instead it is the dose that most people need).

[SueJohnson]

Did you ever get your ferritin checked?

[67Waterman]

Lovely Jools below recommended Prof Walker at Queen Sq Neurology Hospital and is absolutely correct about the long NHS waiting time for an appointment. My doctor referred me about 2 months ago, and I have got an appointment for February 2023 ..... shameful really. And that is not with Professor Walker himself, but just for an assessment ....

[Ruffabug in reply to 67Waterman]

Interesting! I think I may use some savings to have a private consultation and then see if it’s possible to transfer to NHS. Though it still may mean a long wait I suppose.