Second go round: Has anyone come off of... - Restless Legs Syn...

Restless Legs Syndrome

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Second go round

99selkies profile image
10 Replies

Has anyone come off of Ropinirole or the patches due to augmentation, then gone back to taking it after a break of a year or two

Just wondered as both of these worked really well for me for a couple of years each

I have been taking Tramadol for 9 months and that is beginning to be less effective now too.

My GP is about to start me on Pramipexole and I just wondered if anyone had taken a holiday from the other two dopa meds which had initially worked so well for me and returned for a second try

Thank you

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99selkies profile image
99selkies
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10 Replies
LotteM profile image
LotteM

I did. I was initially on ropinirole, augmented in hindsight relatively quickly, stopped after a year and tried it again about one and a half year later. Lasted a bit longer the second time around, but not very much. I did keep the the initial lowest effective dose, which in my case was 0,25mg. When that stopped being effective again, I simply stopped again. Since, I have been on oxycodon slow release (Oxycontin), initially 5 mg, now 10 mg.

Take home message: for all means, try again, but DON'T INCREASE the initial effective dose. Good luck.

Others have returned to a dopamine agonist too, some with much longer success. I guess they will tune in.

99selkies profile image
99selkies in reply toLotteM

Thank you That's very helpfull

Chester09 profile image
Chester09

99selkies never thought yoh could do that but i would try it i have been on the patches for nearly 4yrs dreading the time when they dont work

99selkies profile image
99selkies in reply toChester09

Thank you

Yes; I returned to pramipexole about 18 months after withdrawing following augmentation. I have been on it for over a year now although I take breaks every so often to try to avoid augmentation. I will never increase above 1 x 0.088mg tablets. I ensure that my iron levels are as high as I can get them because there is a link between low iron and augmentation. I also take ldn (6mg daily) which I am convinced (based on a study of me and one other - so admittedly not overwhelming evidence) that it helps avoid augmentation and also keeps me more alert during the day. I occasionally need a small shot of kratom or some solpadeine (for the codeine) to boost the effects of the pramipexole if I have sinned during the evening (red wine or too much sugar).

The differing experience of LotteM and me illustrates how differently RLS sufferers respond to the same drugs. I think I am not hugely sensitive to drug side effects generally and this may be why I have not augmented this time around. I would say it's worth a try but stick to the minimum dose and if you notice it not working reduce/eliminate rather than increasing it. It definitely seems that constantly increasing a dopamine agonist contributes to augmentation.

99selkies profile image
99selkies in reply toinvoluntarydancer

Thank you That's very helpfull. The patches worked with immediate effect for me so its very tempting to return to tham

involuntarydancer profile image
involuntarydancer in reply to99selkies

It was the same for me with pramipexole - nothing worked so well - my life is almost normal while I am on it.

With the patches there is apparently a lower incidence of augmentation (although the jury is out as to whether this is only because the symptoms are less obvious thanks to the slow release operation but hopefully for your sake it is actually the case). I would reiterate that keeping to the lowest dose is probably important and possibly taking occasional voluntary breaks (ie before you feel you actually need them) might prolong the useful life of the drug.

I hope you will keep posting - it is really interesting to hear how others get on doing this. Someone else posted about it a while ago but it is relatively unusual for people to return to a dopamine agonist after augmentation.

99selkies profile image
99selkies in reply toinvoluntarydancer

I will keep people posted

Thanks again

Sara_2611 profile image
Sara_2611

Hi 99selkies - I've never used it Good luck with your new medication - hope it makes life more comfortable . Have a good weekend

99selkies profile image
99selkies

Thank you

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