Ropinirole withdrawal experience?

[joepublic]

I am currently 1 week into this activity dropping 0.25 MG every 2 weeks (planned) & have been getting RLS augmentation back from 13:00 until bedtime now each day. The plan is to wait for these symptoms to subside then make the next 0.25 MG drop. Any experience as to how long this first stage takes as it's driving me nuts? I am almost tempted to step up the Ropinirole again to where it was as I was problem free for a month with Targinact + Gabapentin + Ropinirole.

[Hidden]

I am assuming that you mean you were getting symptoms as early as 13.00 (i.e. augmentation) but now they only appear at bedtime.

If this is the case, symptoms at bedtime is NOT augmentation.

I'm afraid that stopping ropinirole may treat augmentation, but it also means that you may have some withdrawal effects and if you were taking nothing else then even after augmentation you would still have RLS, as you did before starting anything.

Opioids can help with withdrawals, but gabapentin isn't renowned for it.

The other thing is you're used to the opioid.

Waiting 2 weeks after reducing ropinirole is typical, but it can't be said for certainty that withdrawals will end then. You may have to wait longer.

As the dose of ropinirole gets lower, withdrawals can worsen, so you may have to take it even slower.

Withdrawal can be horrendous, but it should pay off if you stick it out.

Increasing the dose again to give yourself a break, will probably only result in withdrawal effects again when you start reducing again. This will either just prolong the process or even prevent it altogether.

Please persist, it takes time.

[joepublic in reply to Hidden]

I start getting RLS symptoms about 13:00 now & they persist until bedtime , whereas I had none initially after starting Targinact. I will just have to accept these symptoms at every stage then but not drop to the next reduction until they subside however long it takes.

[LotteM in reply to joepublic]

Correct Joe. It is hard and will be hard. I just hope there will be better times in between.

Is there any chance you are allowed to slightly up your Targinact dose temporarily or occasionally when the withdrawal is too much to deal with?

Please feel free to post to moan about the difficulty of the situation. We understand! You may want to look up posts of about 5y ago by Nick-the-turk ( he still posts occasionally) when he was withdrawing from ropinirole I think.

As Manerva wrote: please persist. You will feel better in the end.

[joepublic in reply to LotteM]

I probably could increase it but I don't know what that will do to me in terms of side effects as the constipation is bad enough & I seem to be functioning well apart from that so don't want to spoil it. I'll see how it goes.

[LotteM in reply to joepublic]

Do you take something for the constipation? It is a well known side effect. My pharmacy offered me a powder (macrogol and electrolytes) to help from the first day I was prescribed an opioid. Now my defecation is far more smooth and constant than it was ever before.

[joepublic in reply to LotteM]

I use Senna at the moment.

[joepublic in reply to Hidden]

It's been over 2 months now & I have just reuced again bu 0.25 so down from 2.0 to 0.75 a day now. The last 2 nights have been the worst so far with limbs thrashing from about 11:30 - 03:30 when I get up to do something to relieve it. Withdrawal is hard & tempting me to revert the dosage but I'll press on.

[Hidden in reply to joepublic]

Oh dear, I am sorry to hear this.

I hope you persist though, it really will be worth it in the end.

Some ideas you might consider.

Don't lie in bed thrashing, I used to do that. It's not a good idea.

A sleep hygiene rule is if you've not gone to sleep in fifteen minutes then get up. You may not get any more sleep but psychologically it can be quite damaging to lie there struggling.

Do something distracting.

Did you increase the targinact?

You might also ask your doctor for a sleeping aid like zopiclone.

[joepublic in reply to Hidden]

I didn't up the dosage on Targinact but may need to now? I do get up after a while & jump on the PC as I am now. I do have some Zopliclone but wasn't sure as to whether to mix so many drugs - is it OK with Targinact & Gabapentin?

[Hidden in reply to joepublic]

I should think so, but I wouldn't take it regularly.

[joepublic in reply to Hidden]

OK I'm try one tonight - thanks for the advice.

[Nettles68 in reply to joepublic]

Hi joepublic, sorry to hear you are still struggling!I am still waiting for my neurology referral. It was sent through as urgent due to the horrendous augmentation/withdrawal symptoms I was suffering but after a couple of weeks of hearing nothing I got back in touch with the docs in desperation to find that the referral hadn't actually been sent through! (clerical error I imagine) 😭

I have now had my oxycodone upped to 20mg at night and 5mg during the day, all slow release. This is just keeping a lid on things and I am actually getting some sleep.

I hope my appointment comes through soon...

I really feel for you and hope you get relief soon. It is amazing what you have accomplished in lowering your dose of ropinirole so far, you are so near now to crossing the finishing line! Well done 🤗

[joepublic in reply to Nettles68]

That's not unusual with GP's and the admin 'bermuda triangle' hope you get someone who knows what RLS is.

[Nettles68 in reply to joepublic]

So do I! But if not I am prepared for battle, armed with printed off study papers etc and a very cheesed off husband in tow 🤨Keep up the good work joepublic, I hope things greatly improve for you soon. Let us know how you get on, it is encouraging for all of us who are in the same boat to see your progress

😊

[joepublic in reply to Nettles68]

Thanks - it always amazes me when I finally got to se someone & they have zero knowledge of what I am telling them - just seems as though we are alone. This forum of people living the hell are the best source of info & remedies. People who don't have it or live with someone who does haven't got a clue what we go through. Waterboarding is probably similar.

[joepublic in reply to Hidden]

I tried the Zopliclone last night & did get about 4 hours of broken sleep. One of the thing I notice s a violent jerking of the whole body every 12 seconds regularly all night - it's been videod.

[rls-insomniac in reply to joepublic]

Keep going Joepublic. We're rooting for you. It is bloomin hard but it will be worth it in the end. When I was weaning off ropinirole, in the end I was taking 15/20mgs of Targinact and 250mgs of pregabalin. I took the view that I'd take whatever my GP was prepared to give me, to get me through and would sort things out afterwards. I gave up sleeping in bed and slept on the settee as I was up and down all night! Keep strong.

[joepublic in reply to rls-insomniac]

Thanks for the support

[B534967]

I am in agreement with Minerva - I am now down to .25 mg Ropinirole from 1.5 and like you I have problems for the first few days following the reduction -- it does get better... I would not increase again because you will go through it all over again. I am looking forward to being done with the Ropinirole completely! Using Gabapentin now - 1500 mg (600 2. hours before bed then the rest an hour before bed -- it's working. B534967

[joepublic in reply to B534967]

Thanks it's what I hoped to hear .

[valleysjumping]

Hello Joepublic, My experience with Targinact wasn’t very good. I increased

[joepublic in reply to valleysjumping]

Increased what?

[valleysjumping in reply to valleysjumping]

Sorry - let me try again. I started on 5 mg of targinact for 2 weeks, and then went up to 10 for 2 weeks, then 15 for 2 weeks and then 20 for 4 weeks. I’d sometimes get 3 hours sleep but usually less 2, 2 and a half, and then have to walk about for up to an hour. So really no better than anything else I’ve tried over the many decades I’ve been a sufferer. And also a downside was the wooziness, day as well as night. Couldn’t think straight. So came off again, gradually. But as people often say, RLS affects us all differently so I think anything is worth a try. I live in hope I’ll one day find something that will do the trick for me...

[joepublic in reply to valleysjumping]

I have been on 5 mg for about a month & get a bit of augmentation late evening but nothing like it was - sleep is excelllent.

[joepublic]

I'm now Ropinirole free since about July & a different sleep pattern has emerged with deep sleep initially for an hour followed by a few hours of RLS irritation followed by deep sleep again from about 4:00 AM. Trouble is I can't really tell if it's ongoing withdrawal from Ropinirole or the return of RLS even with the Targinact. Wait & see I guess?.

[Runedrun26 in reply to joepublic]

How long were you on ropinerole before you decided to quit.

[joepublic in reply to Runedrun26]

Many years- maybe 10

[Runedrun26 in reply to joepublic]

I’ve been on it for about six months 2mg dosage.

[Runedrun26 in reply to Runedrun26]

So far it’s been good for me I’m 75 I don’t think I’ll be around much longer anyway.

[LotteM in reply to joepublic]

Hi Joe,I had more or less the sleep pattern you describe when I took slow release oxycodon (Oxycontin), the relevant ingredient of Targinact. Also, I felt less and less 'me' while on Oxycontin. Others described similar experiences which helped me decide to go for another opioid. It took several discussions with my neurologist, a (very unhelpful) 2nd opinion from another neurologist and two good scientific papers on buprenorphine to finally be allowed to switch to buprenorphine. In a few days I felt 'me' again, slept full nights and have since, except on rare occasions, and I am slowly regaining strength and energy again. Maybe for you it is time too to discuss your current medicine with your doctor? In case you wonder: Buprenorphine (Temgesic) does get prescribed in the UK for RLS. See other posts on this forum.

Edit: sorry Joe, didn't read your update. Well done for getting off. 👏🏻 And yes, it may still be withdrawal. It may take several months for the increased symptoms to settle.

[Runedrun26]

Hey joe I’m on 2mg of ropinerole and I’m getting ready to start cutting back as you have done, I know you will be successful. Bless you

[joepublic in reply to Runedrun26]

Good luck - keep me posted