Ropinirole withdrawal: is it always agony?

[dickJones]

I have PLMD, which developed from RLS some 6 years ago. I've been on Ropinirole for 3 months at a dosage of 2 x 0.25 mg a night. It's just beginning to lose its effect with PLMs occurring at night 1 hour plus after taking the tablets & now an hour or so before the 6-hour half-life is through in the early hours of the morning. I'm very reluctant to increase the dosage, although I know that's what my GP will direct me to do. (He has no experience of PLMD & Ropinirole withdrawal, having only prescribed Ropinirole for Parkinson's Disease). So I'm minded to stop the Ropinirole & fall back on the now very small list of medications still available to me. Reports of dopamine agonist withdrawal are almost universally negative. But there must be some instances of relatively well-managed experiences. If you have knowledge of such examples, personal or reported, I would be very grateful for notification. Many thanks, Dick Jones.

[Joolsg]

I would imagine that as you have been on a low dose for such a short time period you may well find withdrawal a lot easier than most on here.

As it has lost effectiveness so quickly though I would be reluctant to go on another dopamine agonist if I were you.

Ask your GP to prescribe you either Pregabalin or Gabapentin instead.

You should still reduce Ropinirole slowly and have some strong painkillers available in case you do have a hard time reducing.

[Hidden]

Any withdrawal from DA's should be done slowly and done best with a plan, that done right with another drug added in like Tramadol and it should be a relatively easy process - although in the interests of openness it can be pretty crappy too!

I was taken off my DA by a Dr that didn't know/care that there were problems with withdrawal occurring abruptly so I went in on a Monday and that was it stopped. I am not sure how high the dose was but I know it had been increased several times. Anyway I stopped dead and went onto something else I can't remember, (think maybe Tramadol).

I can't honestly remember how bad it was but I really don't think it was that bad tbh. I had another drug to replace the one I was losing and was able to get enough to keep me ticking over...I think!!

WHAT I DO KNOW is that being off DA's is great - I had a whole host of problems like brain fog and falling asleep that were being blamed on another condition. They are not a good drug and if you can get away without taking them you will be better off.

I can't think who, but there are plenty here who have changed and admittedly some didn't get it easy. Plan well and search on here for some of the guys that have managed it - The Turk, damn -there is a ______the turk I think that had a good thread on coming of Mirapexin if you can hunt him out. Hopefully someone will post up who it was for me - please and thanks.

TL;DR

It can be tough but for some it can be quite easy - a good plan and the right replacement drugs and things shouldn't be to bad at all.

NICK THE TURK - got it, yeah me take a look at this thread:

healthunlocked.com/rlsuk/po...

if that doesn't help you could maybe PM some of the guys posting on it. Good luck.

[LotteM]

No, it is not always agony. Mine wasn’t. I had been on ropinirole 3x0,25mg each evening for about half a year, after increasing slowly from half a tablet to three over the course of 4-5 months. I stopped from one day to the next, BUT I jad tramadol 50mg toreplave the ropinirole. No withdrawal or whatever, only quer legs. Unfortunately that didn’t last very long (1month), bit that is my story. We are all different.

See if you can get tramadol to “wean you over”, and then see whether you want to stop at once and whether the tramadol suffices to quell the symptoms. If that works well, you may want to switch to pregabalin or gabapentin, as joolsg suggests above.

Keep us posted!

[involuntarydancer]

I second everything the others have said. I don't have plmd - 'just' rls - but so far as I am aware plmd can be (even) more tricky to treat. I have a vague recollection of having read that only the dopamine agonists are hugely effective. It's certainly worth trying pregabalin/gabapenting but you may therefore ultimately have to consider re-introducing a dopamine agonist if you don't find a good alternative. My own experience suggests that if you leave a long gap before resuming a dopamine agonist and are very vigilant about keeping the dose low (like maximum .088mg UK measurements or 0.125mg US), keeping iron levels high and maybe taking breaks every so often or only using every second day, it is possible to reintroduce a dopamine agonist if it is absolutely essential.

[Merster]

Hey dickjones.. I have been on 4mg requip for 2 yrs now and with very little problem I have completely gone off altogether. Not to say I am cured but I had my best night in 2 yrs recently and found to my glee an entire night with no leg pain or sensations. Mind you last night not so good. This does give me hope that without the requip and by continuing to look for other alternatives I can soon put this behind me. Best of luck to you

[dickJones]

Many thanks for the detailed responses, folks. Much to think about before I see my doc this morning. But some cause for a little optimism! Good luck to all of us, fighting in the darkness as we are!