Worse than ever after coming off Ropinirol

[Roser1985]

Hi all. I was on Ropinirol and it was helping until I noticed augmentation a couple of weeks ago. I’ve now come off it but my RLS is worse than it’s ever been. Has anyone else encountered this? Will it ease back to pre-Ropinirol levels? If I’d have known this would happened I would never have started taking it! Thanks.

[Heatherlss]

Hi Roser,

Welcome to the augmentation club. It sucks.

You're right that your RLS is worse since coming off DAs. It is supposed to get worse and will remain the same for a while. I remember mine kept getting worse as time passed but seemingly, mine's a unique case. It should get better for you likely as you enter the 4th week. It is supposed to go back to Pre-DA days. Hopefully for you it will. What are you taking to manage the withdrawals ? (Sometimes withdrawal can go on for 3-4 months).

[Roser1985 in reply to Heatherlss]

Thanks for the reply!

Ugh that’s not ideal, I was hoping it would only last for a few days!

I’m not taking anything for the withdrawal. I know I probably haven’t done the right thing in coming straight off the Ropinirol rather than weening off slowly. But I was only on 1mg per day and thought I’d be better off going cold turkey and putting up with a few bad nights’ sleep rather than dragging out the process.

I suppose my options are to either stick it out or halve the dosage for a week or two then try again.

[LotteM in reply to Roser1985]

Heather is right. It will take weeks rather than days. And the choice it yours. Either stick to your cold turkey or revert to taking a half dose, reduce further in 1-2 weeks. If you choose the latter, ropinirole also comes i. 0.5mg and 0.25mg tablets. Although I am not sure the latter are available in the UK (I am in NL). Halving pills is fairly easy, breaking them into quarters much more difficult and imprecise. But, you may decide to stay put. If you do, try to get help from your gp, and ask for a strong painkiller to take temporarily. Tramadol is the usual one. If that route doesn't work, get some otc co-codamol. If you want to the alternative or illegal route, cannabis or kratom have been proven effective for many as well to get through the withdrawals.

[Hidden in reply to Roser1985]

Once your withdrawal symptoms have subsided you should go back to where you were before you starting taking the ropinirole. Presumably you weren't happy with your RLS then, that's why you started on the DA.

Since time has passed the point you return to may even be worse.

In that case unless you have done or do something about it, the symptoms you're now experiencing may not be withdrawal symptoms, but how it's going to be - indefinitely.

If your RLS was originally so severe as to require medication then you possibly still need some medication.

It sounds as if not only have you gone cold turkey, you haven't replaced the ropinirole with anything.

If that's the case then you should consider taking an alternative. It would also have been better if you'd done this before stopping the ropinirole.

Additionally, it's not quite true that it's easy to stop taking a low dose of a DA. Generally, it's easier to cut from a high dose to a low dose than it is to cut from a low dose to nothing.

As I see it, you do now have several options

1 Continue taking nothing and hope your symptoms fade.

2 Continue to take no further ropinirole and start taking an alternative

3 Go back on 1mg or 0.5 mg ropinirole them wean off it in steps of 0.25mg over several weeks.

4 Go back on 1mg or 0.5mg ropinirole AND start on an alternative, then wean off ropinirole over several weeks.

You could also explore all the non pharmaceutical measures for RLS as outlined on this site.

I'd suggest 2 or 4, but you have to be aware that it takes several weeks before the alternative starts to work.

The alternative first line medications for RLS are gabapentin or pregabalin.

[Bftalbert in reply to Heatherlss]

Try 1/4 to 1/2 cup of coffee, or 1/4 to 1/2 tablet of caffeine. I know it sounds counterintuitive, but it works.

[NellieK]

Yes, it should end. I remember it took only a few weeks to stop feeling augmentation after stopping ropinrole, but I only took it for a few months before I got the augmentation. Try kratom. Took away my rls completely.

[Bealol]

Hi, I came off the ropinirole over 5 weeks ago and it was tough but things are improving in that I don't get an attack every night, hang in there and I hope things get better for you.

[jwood396 in reply to Bealol]

I have been weaning off rophinorole of 1mg 3x's a day to one at night. found 25 mg tramadol works great. caffeine makes it worse for me.

[bill54321]

Wat level were you7 on? over 2mg total a day?

[Bealol in reply to bill54321]

I was on 1.5

[sudokufan]

Hi. I'm in the same situation as you, so I really do sympathise. I'd been on Ropinirole for a couple of years but wasn't sleeping well, don't know whether this was augmentation or not and my doctor wouldn't say. Finally got an appointment with a Neurologist. I'm in England. It took weeks for his opinion to come to come back to my GP, by which time my GP had changed and I could only have a telephone appointment because of the Coronavirus lock-down. I declined the GP's suggestion that I should just persevere with Ropinirole, so he said to reduce this from 2 mg per night to 1 mg for 1 week, stop completely for 1 week, then start Rotigotine Patches (yet another Dopamine Agonist!?).

I'm finding it very difficult to cope now I've completely finished the Ropinirole, my RLS is worse than it's ever been. I asked my doctor during that first discussion whether he would be able to prescribe me anything to help through this period, and he said "not really".

I can't see the point of a medicine that makes you feel a bit better for a while, then makes you feel far worse. But maybe I'm just especially negative at the moment.

So sorry to ramble on, but just wanted you to know that you are not alone, and when you're writhing around at all hours of the night, I probably am too!!

Best wishes - if you can survive it, I will too!

[Nlthomp]

Hi Roser,

Same here. This is hell coming off Ropinirole. I can’t imagine just stopping it cold turkey. I started taking Gabapentin 900mg about a month before slowly weaning off Ropinirole. I don’t know if it’s helping because the withdrawal is so bad.

It sounds like things will settle down for you in a few weeks and if your RLS is still bad you can try either Gabapentin or Pregabalin. I don’t think these drugs cause augmentation.

Hang in there and know you’re not alone 😊

[Roser1985]

Thanks for all the comments and advice everyone, really helpful!

[Bukyboy]

I was on Ropinerole a few years ago & suffered augmentation too. I was determined to come off it, so suffered for a few weeks, but ultimately I am happier without regular medication. They all seem to make me woolly headed at best. I nicknamed them giddy pills, because I couldn’t walk straight for the first few weeks!

These days, I take occasional relief. I mostly put up with the restless nights. Sometimes they aren’t too bad, but I rarely sleep for more than an hour before they start up again. I take 1/4 Pramipexole once every now & then (weekly or less - I don’t want to get hooked or encourage augmentation again). I find this works for me. I still dread nighttime, but have a good nights sleep when I choose to take the quarter pill (at least some rest bite!)

From what I can make out; it seems that people on regular medication seem to suffer more in the long run, which is another reason I came off the regular meds.

This is me, though. Another thing I have learned is that every one of us sufferers is unique. ‘One man’s meat is another man’s poison’ . I was recommended quinine, even had it prescribed - I discovered quinine is the WORST thing I can have; almost instant, severe, restlessness!

Good luck in your quest. I hope you find restfulness 😊