What to take after coming off Ropinirole

[Scattypatty]

I'm quite new to this site, my

Last post was about the gambling problem I have with taking Ropinirole. I'm now desperate to come off Ropinirole and have been trying to reduce my dosage. I have reduced it from 2mg to 0.75 but at a price. I'm going through augmentation and since trying to reduce the dosage my legs and arms have got a lot worse. I've barely slept all week and am writing this at 3 am in the morning having had 2 hours sleep. At the moment I'm only taking Cocodemol to help with the pain. That is because my doctor doesn't want to prescribe anything else as I have an appointment next week at the National Hospital for Neurology in London. I'm seeing someone from the Adult Movement Disorder Department, how much they know about RLS I don't know but I will keep you posted on how I get on.

My husband thinks I'm mad for trying to reduce my tablets now, he thinks I should wait until i have been prescribed something that is going to help me through the horrible journey of getting off them. So what I want to know from the many very knowledgeable people on this wonderful site is what is the best medication they have found after coming off a dopamine agonist. Also do you think it's better to reduce the dosage slowly like I'm doing which is going to take longer or wait until I get prescribed a replacement tablet and stop them all at once. Any advice would be greatly appreciated.

Thanks

[Joolsg]

Hi ScattyPatty

There is no quick or easy way to get off Ropinirole . You’ve done brilliantly getting down to 0.75mg on your own using co codamol.

You are going through withdrawal and it’s hellish. Even if you see a neurologist at The National in London, you would still have to go through this terrible time.

The alternative meds once off Ropinirole are alpha2delta ligands like Pregabalin and gabapentin or opioids. Opioids like tramadol can ease the withdrawal symptoms slightly but it will still be really hard.

Pregabalin was found to be more effective than pramipexole ( another Dopamine agonist) in a 2015 study so it is a possible alternative for you. It takes 3 weeks to become effective and can be taken at the same time as Ropinirole. Ideally you should start it 3 weeks before you plan to drop the last dose of Ropinirole.

I really hope you see a good neurologist who knows about RLS. You can ask them what they know about Augmentation and DAWS and if they cannot give you a full response, you’ll know they lack the experience to treat you effectively. Do not let them prescribe another DA as you will quickly augment.

They should also check your serum ferritin levels and you could ask your GP to arrange the blood tests now so you have the results in time for your appointment. Levels should be above 100 - that seems to help RLS ( but not everyone).

During the awful increase in RLS and sleeplessness, try really hot baths, compression socks, pilates clam exercises and squats. If you can get hold of cannabis- it really helps. I managed to get an shours sleep a night during the worst of withdrawal using illegal cannabis.

Do let us know who you see and how you get on.

I wish you strength.

[Hidden in reply to Joolsg]

Kindle.

[Hidden]

Just to second what Jools says, (who appears to get less sleep than me!)

I think you should expect some degree of expertise from the neurology hospital. So all being well they'll help you get off the Ropinirole. As Jools says, don't let them prescribe another dopamine agonist.

It's a difficult choice to make between getting off a dopamine agonist because of terrible augmentation as fast as you can, against waiting to have a withdrawal plan in place.

Your husband may have been right, but you have done well.

Good luck next week.

[Joolsg in reply to Hidden]

You’re right Manerva- last night was particularly bad for some reason. I seem to have one good night and one really bad night with no explanation.

I’ll be having a siesta if the legs behave.

[Hidden in reply to Joolsg]

Sympathies from me Jools. I have had 3 horrendous nights in a row, lucky to get an hour in the night and RLS was too active to nap in the day. Changed the tramacet to the tramadol yesterday plus my usual cut up bit of pramipexole and i had a much better night last night, think i had nearly 4 hrs straight sleep in the early hrs. But this doesnt last for me, the tramadol becomes too much for my system and the side effects become unbearable, so then its back to the tramacet plus the usual pramipexole. Oh the joys of RLS amd meds, Hope you get a siesta.

[Joolsg in reply to Hidden]

Sorry to hear that Elisse. I really hope it settles for a few nights very soon.

[Scattypatty in reply to Hidden]

Thank you everyone for the excellent advice. I want to take as much info as possible with me when I go for the hospital appointment just in case they are not clued up on RLS. At the moment I can't imagine how much worse it can get, but I'm sure it will nearer to coming off the Ropinirole and it fills me with dread just thinking about it. It already feels like torture.

[Restless1967]

Good luck with coming off Ropinirole. I was given Pregabalin when I wanted to come off Ropinirole but it did not work for me and gave me a rash. In the end i just went cold turkey.

It took me about 6 weeks to get it out of my system and then I realised that the medication was actually making my symptoms worse.

I would definitely recommend having an iron infusion as this worked for me.