Question to those who weaned from pri... - Restless Legs Syn...

Restless Legs Syndrome

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Question to those who weaned from primapexole

Moonpen profile image
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Hello my fellow night walkers. This is a question for those of you who have managed to wean off of a dopamine agonist. At what dose did you just stop taking all together? And did you continue to have withdrawal symptoms after that? If so approximately how long did that last? Thanks in advance to anyone who answers these questions.

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Moonpen
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Joolsg profile image
Joolsg

I weaned off Ropinirole in 2016 by reducing 0.5mg every 2 weeks. I then just stopped the last dose of 0.5mg.

The worst of the withdrawal happened the day after the last dose and the 2 weeks thereafter.

It then took about 6 months to find the right combination of meds and for all the DAWS symptoms to subside completely.

CoMtWo profile image
CoMtWo

I went off US version of pramipexole dose (which was actually an overdose) of two 0.25 mg tabs/day by decreasing at 1/4 tablet every 7-10 days. I also was, pre-tapering, on 200 mg of gabapentin, which, as I tapered the pram I upped by 100 mg ending up at 600 mg. After 2 weeks on just gabapentin (my husband had to move to our spare bedroom during this whole withdrawal period due to my thrashing) I've now switched to just a once a day Horizant (gabapentin encarnabil) at 600mg. I don't dance and thrash much at night most nights now, but still am experiencing periodic nasty nights. Not wiggling, just mostly not sleeping more than 3-4 hrs. But I've been an insomniac for years, well before being hit with RLS at age 50. But daytime and evening RLS symptoms mostly gone. If I miss the 5pm dose of Horizant, I've been taking 200 mg of regular gabapentin at bedtime and when waking during the night, take 300 or so more. Then back to the Horizant each day at 5pm. So far, so good. When at home in Colorado tho, I do use a medical marijuana vape pen for 2-3 puffs to help my insomnia. Can't travel with it tho.

Operabab profile image
Operabab

Hello

I weaned off ropinerole and was then put on mirapex the process was pretty awful both times but obviously once you argument on them you have no choice anyway the best way is to do it as slowly as possible until you reach the smallest does available even then consider chopping in half. Withdrawal can be tough pacing all night I had a lot of pain in legs and arms bad for about 2 weeks no sleep gradually improves I was then put on pregablain to be honest not helping a great deal but manage a few hours each night so in a better place than I was. Good luck it's a daunting prospect but something you need to do Dr may be able to help mine wasn't willing to. All the best

BeachGolfer profile image
BeachGolfer in reply to Operabab

As I just recently reported, I’ve been weaned off Mirapex for about a month and could never have done it without Percocet. I tried Neurontin and Horizant after weaning but both gave me severe insomnia. I’m now on Percocet for the RLS and either Valium or Xanax for sleep. I’m now perfectly happy with this combination except for having to deal with the bias against taking even a low dose of Percocet due to the opiate crisis here in the US.

Neverquitting profile image
Neverquitting

I weaned down from .75 to .5 by taking prenatal vitamims( random I know). then took 6 weeks to get down to .25 which was hell. I then just stopped all together. I had to get get 24 hour help. It took 5 days of zero sleep and on the 6th day I slept 5 hours and woke up feeling like a glimpse of my former self pre mirapex (I was on it for 9 years). For me I was better off of it but my nights were still horrible. It’s been 3 years and I don’t take any meds anymore and sleep most nights. It’s been a long road and I’m still suffering from brain function. It’s worth every second of agony to get off the drug. Don’t give up and stay away from All DAs! They will try to give you a replacement and you will be back at ground zero. If you can survive RLS you have the strength to get off this drug! Best

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