Augmentation

[Huntingleroy]

Hi all , Im slowly weaning off Ropinirole and it has been hell with lots of sleepless nights , I even fell asleep walking and fell , bruising all my back .Im down to 1mg now from 6mg taking the immediate release. Last night my legs were fine until I took my tablet at 20.00 and by 20.15 they were going mental . Is that the Ropinirole doing that or is it too soon ? Or maybe its just coincidence ? Have had 2 good nights sleep with the help of Gabapentin and Codeine . Long may it last !

[Joolsg]

Have you reduced from 6mg to 1mg in 18 days????That's very, very fast.

There are 2 schools of thought.

Most US experts advice a slow, steady taper over 6 months from such a criminally high dose of Ropinirole.

Johns Hopkins University hospital in Baltimore say that the suffering happens anyway so their data supports a 3 week reduction. That's what you are doing.

If you can cope, then continue.

I had several falls while reducing Ropinirole. It's common. You are completely sleep deprived but the withdrawal RLS means you have to walk.

As you're down to 1mg you can either carry on reducing fast or slow it down by reducing 0.25mg every 2 weeks.

Keep increasing the gabapentin and once you've dropped the last dose of Ropinirole, start taking gabapentin at night only in split 600mg doses.

And make sure your serum ferritin levels are above RLS recommended levels.

[Huntingleroy in reply to Joolsg]

Yes i have because I just want to be off it for good . Im actually on 2mg but next step is 1mg .Prefer short and sharp treatment to long winded , but thats just my impatient self ! I take Ropin 2 hrs before bed but my legs often kick off about 16hrs so its hard to juggle times etc .Thanks for replying

[Joolsg in reply to Huntingleroy]

That's normal for withdrawal sadly. I know of only 2 or 3 people who didn't get severe withdrawal.Stay strong as once off Ropinirole, the RLS reduces in severity and hopefully the gabapentin will cover your symptoms.

[Huntingleroy in reply to Joolsg]

Hi its 4.30 am and Ive managed just 2 hrs sleep and legs have kicked off again.Im just at a loss as what to do next. Im down to 1mg ropinirole and dr has prescribed 900 mgs gabapentin 3 times a day which seems a lot to me ? I shall be horizontal ! Also 30mg of codeine at night. Have just asked to try some Clomazepan in the hopes that might work . Neurologist also suggested via email Dipyrimadole , any thoughts on those 2 drugs beside side effects ?Going to stay on 1mg gaba for a while i think.Tried Thurs night without it and was feeling I couldnt take anymore . Thanks for help

[Joolsg in reply to Huntingleroy]

Withdrawal is different for everyone. After I dropped the last dose of Ropinirole, I didn't sleep for 4 days. I nearly lost the plot. Cannabis was the only thing that knocked me out.

900mg gabapentin 3 times a day is the dose for when you're off Ropinirole. It won't do anything for the withdrawal symptoms. It starts to work about 3 weeks after the last dose of Ropinirole.

Usually, the only meds that help the severe increase in RLS are low dose opioids, like codeine, tramadol, oxycodone.

I would consider reducing the gabapentin and take just 900mg at night until you're off Ropinirole. Any dose above 600mg isn't fully absorbed, so experts advise spilt doses 2 hours apart. Take 300mg at around 8 or 9pm and 600mg at 10/11 pm. Then once off Ropinirole, take it at night only in accordance with SueJohnson schedule.

Clonazepam and dipyridamole are good options but again, no point taking them until OFF Ropinirole.

It sounds like your neurologist is just throwing EVERY possible drug at you.

Nothing will really help during withdrawal except opioids. So stick with 900mg gabapentin at night and codeine as needed.

Once you're off Ropinirole, then you can see if gabapentin alone helps. It's not good to add Clonazepam and dipyridamole at this stage.

Wait until withdrawal is over. If gabapentin at night in split doses of 600mg doesn't help after a month, then you can try adding Clonazepam or dipyridamole.

[Joolsg in reply to Huntingleroy]

sleepreviewmag.com/sleep-di...

Just in case you need to show this to your neurologist. Withdrawal from Ropinirole is usually hellish and Dr Ondo, an expert in RLS, sets out how difficult it is.

It's why low dose opioids are often required, short term, to get patients off these drugs.

[Joolsg]

Oh and your neurologist clearly knows nothing about RLS. Buprenorphine works really well for RLS but you may have to fight to get it. In many areas of the UK it is red listed, which means GPs cannot prescribe. Only a specialist is able to prescribe and they have to monitor you.

If you have a sleep clinic near you, ask for an urgent referral as they are more likely to know about RLS and will prescribe low dose opioids if needed.