Thought I would just put out there how I have come off Ropinerole and to thank you all for your guidance and support.
After chatting to the doctor he put me on Gabapentane with the instruction to come off Ropinerole first then start on Gabapentane, 300mg day 1, 2 x 300g day 2, 3 x 3oomg day 3 and then stay on that dose and increase as necessary every three days,
I was having a bad time coming off, so I spoke to my Neice who is a GP. I wouldn’t normally burden her for obvious reasons but she researched this and found it is ok to be on both, but you have to reduce one and you increase the other at the same time.
I have to say there was a massive improvement and I’m only on day 3 and at 0.25mg Ropinerole and this morning I slept through the alarm. I’m still waking up but I have decided that if I do wake up I will not fight it but get up and watch TV for about 30 to 40 minutes. I can then go back to bed and sleep well.
That’s my story so far, so thanks to everyone for your support
Written by
SimonMorriss
To view profiles and participate in discussions please or .
Brilliant. You are doing really well & thankfully your niece has given you the correct advice. You can take gabapentin while reducing Ropinirole.I hope the final drop goes well.
Hey Simon Im just starting coming off Ropinirole my self I had Augmentation on them so my GP prescribed 300mg of Gabapentin while taking the Ropinirole. But after speaking to the forum i to need to stop them. Dropped by .25mg for the last few days and suffering quite badly with aches buzzing in head and brain cloud . Hopefully he will increase the Gabapentin. Speaking to my gp this morning. Hope he can help.Thanks
Hi SailingdudeI think I have been very fortunate with my RLS as it has been mild when compared to many.
Looking at the durg information sheet for Gabapentane it does say to start to build immediately in 300mg intervals daily. Your must not take the 3 at once, rather spread then through the day. I now do mine when I get up, lunch time and early evening.
It's too early to say I'd this is right but I'm trying.
Tonight will be my last ropinerole have been on half a 0.5mg tablet.
Thanks Simon, just dreading the side effects of the Ropinirole. Im currently taking 4mg of Ropinirole but have lowered the dose to 3mg the last few days. But still taking 300mg of Gabapentin, should i increase this as im coming off the Ropinirole. Not feeling to good lots of pain and head noises. Even hearing and seeing things that aren't really there. Maybe im dtopping the dose to quickly will be seeing GP later. Will let you know.
Thanks again to everyone its been a massive help 🙏
Reducing Ropinirole should be done very slowly. 0.25mg every 2 weeks. Hallucinations and head pain are worrying. It seems dopamine agonists do cause hallucinations and particularly if you change the dose.I would go back a step and restart at 4mg and ask pharmacist for 0.25mg Ropinirole pills and explain you're tapering down slowly.
If you dropped 1mg in.a few days, you are having extreme withdrawal symptoms.
Your GP may not be familiar with how difficult it is to get off these drugs. The hallucinations should make them take note and help you taper down very slowly.
Report the hallucinations to your GP and via the Yellow Card Scheme. Until we report, GPs will keep prescribing these drugs and believe they're safe and harmless.
If we all report the difficult withdrawal symptoms, we will get more help. Hopefully.
So go back up to 4mg, and drop by 0.25mg every 2 weeks.
Gabapentin helps during the last stages so hold off increasing until you're down to 1mg Ropinirole and then you can increase Gabapentin.
For RLS, gabapentin is only needed early evening and night. However, while you're going through Ropinirole withdrawal, the RLS ramps up constantly.Once you're off Ropinirole, you can start taking the gabapentin later. Depending on your dose, as anything above 600mg is poorly absorbed.
Usual routine is 600mg 2 hours before bed and 600mg at bedtime.
RLS follows the dopamine cycle so symptoms are worse in late evenings and throughout the night.
That's the usual advice for nerve pain. As gabapentin is prescribed off licence for RLS, it is not widely used by GPs or pharmacists.The dosing recommendations in the Mayo algorithm are written by the world's top experts and state gabapentin should be given in split doses in the evening. Box 7 of the algorithm suggests taking the first dose 1 or 2 hours before usual symptoms begin in the evening and the second dose 2 hours after the first dose.
Gabapentin can cause daytime sedation and drowsiness and that's another reason to take it in the evening and before bed.
However, during Ropinirole withdrawal, RLS symptoms are constant throughout the day until about 3 weeks after the last dose of Ropinirole so it makes sense to take it 3 times a day now.
But once off Ropinirole, to avoid daytime drowsiness you should only need it late evening and before bed to cover the RLS during the night.
Actually the usual advice once you no longer need it in the daytime is take it 1-2 hours before bedtime since it takes 2 hours to reach maximum concentration. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime and once you are off ropinirole for a few weeks then you can increase it by 100 mg every couple of days until you find the dose that works for you.
Hi SimonMorriss. Well done and you appear to be getting there and one sure your Niece didn’t mind and you had a great opportunity to talk to her about the condition and what it does to people and the desperation they feel trying to get proper treatment in the UK.
I’ve just started the journey to withdraw from taking 6mg Ropinirole a day prescribed several years ago and am down to 5.025mg a day. Along hard journey that you have successfully navigated so far. Please let us know how the final release from your last 0.25mg goes and so pleased your sleep pattern is improving and. you’re right staying in bed and trying to fight the effects of RLS only makes things worse, much better to get up for a while no matter how retched you may feel at the time.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Success Story (so far, anyway)
So worried about the future
Severe RLS and scared. 
OFF ROPIBEROLE AT LAST
