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Restless Legs Syndrome and ropinirole

(6 Posts)
Blackwit Thu 06-Jun-24 18:43:57

I have suffered with this for over 20 years. My mother also experienced RLS, although not as badly. I have been taking the maximum dose of ropinirole during that time and it no longer works for me, something called augmentation. After discussing this with my GP we agreed that I would switch to gabapentin.

Has anyone had experience of switching ropinirole for another drug? I understand it can be difficult so I would appreciate any insights from people who’ve managed this.

crazyH Thu 06-Jun-24 18:53:09

Many years ago I suffered from RLS. I think it was my good old GP who recommended 1/2 glass of Indian Tonic Water before bed. It didn’t work straightaway, but after a couple of weeks, I felt the benefits and eventually it disappeared. I haven’t had an episode since. I always have a bottle in my Fridge. Do give it a try, but ask your Doctor first. Good luck !

pably15 Thu 06-Jun-24 19:15:08

my husband suffered for years with restless legs...his arms jerked about too.it gradually stopped a few years ago....I don't know why, I don't remember him taking anything for it .
hope you can get something to help ..

Blackwit Thu 06-Jun-24 19:24:04

Thanks crazyH, I think I tried everything before resorting to medication. I did try indian tonic water, didn’t help my legs, but I developed a taste for the tonic water!

Coolgran65 Thu 06-Jun-24 19:38:32

I have suffered from rls for 40+ years and have eventually achieved some sort of relief with medication.

You don't say what your max dose of ropinerole is. The leaflet may say 4mg but the rls experts will recommend 1mg as max to try and avoid augmentation.
I took ropinerole for 15 years never achieving relief and eventually was taking 5mg daily.
Do not stop the ropinerole suddenly to change straight to the gabapentin. You must taper off the ropinerole. Regardless of instructions to taper over just a few weeks, I spent 10 months doing so very slowly to avoid what can be very difficult. As I tapered I was supported with cocodamol and pregabalin (a sister drug to gabapentin). My current medication is max daily dose of both.

An excellent discussion board is rls.org. It is a charity based in the USA but has worldwide membership.

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Blackwit Fri 07-Jun-24 10:28:40

Thank you Coolcoolgran65. My GP warned me that switching from ropinirole could cause problems especially as I’ve been taking 4mg (the max recommended) for so long. I’ve begun by reducing 1 dose and will start gabapentin today. I’ve heard that it can take months to stop ropinirole, so your experience confirms this. Looks like I’m in for the ‘long haul’!