Coming off Ropinirole for Restless Legs - it's tough

[Insomniak]

It is nearly 2 weeks since I dropped from 3mg/day to 2mg/day of Ropinirole prolonged release and it is tough. I have started to use 15 - 30mg/day of codeine in the form of Cocodamol to allow me get some sleep. I am hoping that this will only be temporary. I still have 6 weeks to go before I taper to zero Ropinrole. I really want to get off Ropinirole though as in the last couple of years (I have been taking it for 10 years) when I do take it at my very precise 5:30pm (+/- 30 min) I actually get RLS symptoms within a few minutes that last for an hour or so before subsiding. But if I don't take the Ropinirole then around 10 pm my legs go mad and I will get no sleep until near dawn. I aim to get Ropinirole out of my system completely and see if Pregablin can take up the strain.

[SueJohnson]

Of course you are suffering because you are reducing much too quickly. The usual reduction is by 25 mg every 2 weeks and wait until the symptoms settle before doing the next reduction. I know you want to get it it over but you don't need to suffer like you are.

[Insomniak in reply to SueJohnson]

Thanks Sue - so I am reducing at twice that rate and worse still the step downs are probably too big at 1mg per time.😣

[RLSAndy]

hey - ive been coming off 4mg for about 4/5 months and its been pretty dark. Im now at .25 and its very up and down, i cant imagine ill drop to zero for a good six weeks or so yet you really need to take it slow especially if you have been on it for so long the drug is the devil and should be banned. The large drops as i did until i came on here mess us up and set us back even longer, i would urge you for your sanity to just slow it down if you can and it will happen in time. I pray it settles for you 🙏🏻

[Insomniak in reply to RLSAndy]

Hi, thanks, it is so useful to hear the experiences of others like you. I get the message loud and clear and I will slow up now. Do you mind if I ask what drug are you transferring to as you wean off the Ropinrole?

[RLSAndy in reply to Insomniak]

I am on Pregabalin 450mg which i take in two to three doses. My usual routine is .25 ropinirole around 9/9.30 with 30mg codeine then an hour later 150 pregabalin then repeat pregabalin every three hours or as i wake, some nights i take another 30mg codeine and some mornings i wake and have pregabalin left which means i didnt need them. I also take two magnesium before bed. Certain things trigger my RLS like as im a chef and sometimes work outside a 15 hour day on concrete really messes me up for days but then like now ive been settled for a few nights.

The plan and hope is once off ropinirole the pregabalin will control things and i wont need the codeine also as i have no prescription for it.

[Insomniak in reply to RLSAndy]

It can’t be easy holding down shift work with RLS. I am fortunate that I am semi-retired and do some very flexible part time work so I can maintain a regular bed time. I’m also transitioning to pregablin only (hopefully) and I have a stash of codeine to hand for when it gets rough. I also take magnesium plus my wife bought me magnesium gel which I put on my legs after exercise which is most days. I wish you good luck with the final steps!

[RLSAndy in reply to Insomniak]

You too man always here to talk if needed.

[NeuroSeeker in reply to Insomniak]

Epsom salt baths sometimes help me when my legs are out of control. Worth trying...

[Insomniak in reply to NeuroSeeker]

Hi, I have found that very useful ok, thanks

[Cobobay in reply to Insomniak]

After weening off ropinerole/pramipexole, with the help from Sue and others on here, I'm now on Gabapentin fully and taking 2x600mg at 5.30pm & 7.30pm and 1x100mg at 9.30pm (hopefully wont have to up for a while),as I'm now waking up with my legs between 3 and 5am and then they don't let up at all. Perservere with the weening off, it takes a while and is awful, but it is definitely worth it and you can start taking the gabapentin whilst doing so. You will get there honestly good luck.

[SueJohnson in reply to Cobobay]

You should take 100 mg at 5:30, 600 mg at 7:30 and 600 mg at 9:30. I assume you are going to bed no later than 11:30. You want your larger doses to be closest to your bedtime rather than your smallest one.

[Cobobay in reply to SueJohnson]

Thank you Sue and I am in bed by 9 most nights.

[LotteM]

I second the others, you are going too fast. The firdt part should be ‘the easiest’, although I would never say it is or will be easy. Not at all!

If you want to slow down as collectively we would recommend, you will have to switch from your current prolonged release to normal (immediate release) tablets. This is necessary as you want to he able to cut the tablets. And prolonged release tablets have a special outer layer that ensures the prolonged release and should not be cut.

Talk to your doctor, discuss your plan and ask for (smaller sized) normal ropinirole. The rls-uk.org website has good info and reduction schedules. It may help to bring these to your doctor or give her/him the link.

Finally, each reduction step every two weeks is just a rule of thumb. More precise it is better to wait for symptoms to settle, wait a few days and then go on to the next step. It will be a long process and it works better if it is as least demanding on you as possible.

Good luck.

[Insomniak in reply to LotteM]

Hi LotteM, thanks for replying, I will be slowing down the process of weaning off now and I will speak to my consultant about getting the smaller sized normal tablets. I have also registered with rls-uk.org. Your info has been very helpful to me and it is reassuring to be able to tap into your experience.

[NeuroSeeker]

I'll just add my two cents on going sloooooow. I was directed to quit Mirapex (another dopamine agonist... I took it after augmenting on ropinerole... I was very trusting) cold turkey.

What followed was the worst 10 days of my life. I ended up with DAWS (dopamine agonist withdrawal syndrome) and the effects of that have not gone away 4.5 years later. I felt something in my brain just unravel. And of course, I was not believed until after all the damage was done.

So, go slow! I agree that the dopamine agonists are devil pills. At least they are no longer considered front-line treatment.

I wouldn't worry about the codeine. I have to take hydrocodone every night to keep my legs moderately quiet. It's considered a "valid" treatment for refractory RLS.

Good luck. It a rough road, for sure - but we all eventually have to take it once we've had DA's for awhile. We can all help cheer you on as you run the marathon.