Pramipexole Withdrawal: Hi, Wonder if... - Restless Legs Syn...

Restless Legs Syndrome

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Pramipexole Withdrawal

Ced60 profile image
16 Replies

Hi,

Wonder if you guys can help. I finally took my last ever 1/4 tablet of Mirapexin on Saturday after having gone from 6 per day. I am taking Buprenorphine which I guess has helped but it has taken me a really long time to move from 6 to none. I was taking them for over 20 years.

RLS has been through the roof every night since Sunday and I wondered what other people's experience was of things settling down after finally stopping ? Approximately how long did your symptoms last ?

Many thanks.

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Ced60 profile image
Ced60
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16 Replies
Madlegs1 profile image
Madlegs1

Going from 6 to zero is a big move.

I'm reckoning that should take at least 6 months. How long for you?

Also- if you were at six tablets for some years, and experienced severe augmentation, then symptoms will continue for quite a while ,-- check out DAWS or PAWS.

Then there's the usual stuff about iron testing, triggers from food or medications etc. see any of Sue Johnson's replies.

So - to answer your question-- yes , it could take a few months to finally get relief post Pramipexol .

Good luck.

SueJohnson profile image
SueJohnson

I'm so sorry you are suffering, but hang in there. It will get better and congratulations for the long hard job of getting off Mirapexin.

Joolsg profile image
Joolsg

What type and dose of Buprenorphine are you taking?It can take months for withdrawals to settle. Especially if you were on 6 x 0.125 for 20 years.

The first 2 weeks after the last dose of DA are hell. Print off the withdrawal schedule from RLS-UK, and show to your GP so they realise what patients go through.

I didn't get ANY sleep or rest for the first 5 days. Constant, severe RLS.

Then I started to get 1 hour, then 2, then 3 hours of broken sleep. After a month, I could get 2 lots of 2 hours sleep during the night. I found sleeping from 6am to noon worked much better, so I became a vampire.

Sleep whenever and wherever you can. Ignore the 'sleep hygiene' nonsense. That only applies to people with extremely mild, occasional RLS.

The Buprenorphine should reduce the worst of the withdrawals and will start to cover your RLS after a month.

You're nearly there.

Ced60 profile image
Ced60

Thanks Jools - I take 4 0.2mg sublingual tablets and try to spread them throughout the day, I did try the patches but they did not suit my skin.

Light at the end of the tunnel, I will keep moving towards it !!

707twitcher profile image
707twitcher in reply toCed60

For most people there is no need to spread buprenorphine doses throughout the day. Maybe try taking all four shortly before bed? A small minority notice slight withdrawal symptoms if taking once a day. Then splitting to twice a day makes sense.

.8mg is still well under maximum recommended dose. If side effects aren’t seriously bothering you, maybe take another pill or two when RLS kicks in. It is fact acting - 30 minutes or so for most.

Ced60 profile image
Ced60 in reply to707twitcher

Thanks 708twitcher , I will try taking them together , I had not realised that they lasted so long … I did ask my GP about increasing the dose but he said that he was not sure what the max was for RLS and that I should wait until my next consultant appointment which is November !!! Do you know what the max recommended dose is please ?

707twitcher profile image
707twitcher in reply toCed60

The Mayo algorithm is basically the Bible on this stuff. It says the starting dose is typically .5 - 1 mg, and the eventual effective dose is .5 - 6 mg. So you could take 30 of the .2mg pills. Obviously, don’t do that - it’s best to increase dosage slowly and monitor the effects. A lot of us here have settled on doses of .4 - 1 mg, but several people take 2mg or more. The side effects are what keeps us all trying to minimize the dose. I’d suggest maybe sending this link to your doctor and asking him/her to let you try taking a bit more.

mayoclinicproceedings.org/a...

Page 1931 shows dosage.

RiversW profile image
RiversW

I second Twitcher's opinion. Since Buprenorphine has such a long half-life, I don't think there is a need to spread the doses. Also, as he said you are not taking near the maximum dose. If withdrawal symptoms remain severe you might discuss with your doctor the possibility of raising your dose. I take a 2mg tablet nightly and my symptoms are 97% controlled.

Come to think of it, I probably didn't need to write this post. I agree with everything Twitcher says. But perhaps it is helpful to hear another voice.

Good luck, I hope you feel better soon!

Ced60 profile image
Ced60 in reply toRiversW

Thanks RiversW / all input is very welcome and helpful thank you

Birdland profile image
Birdland

I found the four weeks after my last dose of ropinirole to be the most difficult time in my withdrawal. Then every month thereafter things improved. I did experience extreme depression for a couple years after that though. It’s been about three years now since my last dose and I think I’ve recovered as much as possible.

707twitcher profile image
707twitcher

Any better results when taking it all together?

Ced60 profile image
Ced60 in reply to707twitcher

Hi 707twitcher - maybe slightly better yes thankyou. I am so tired, getting maybe an hour or two sleep at night and finding that I sleep a bit better on the floor than in bed.

I fell asleep in the bath yesterday morning and then fell asleep literally eating my dinner last night.

I am just trying to keep as busy as possible when my legs are at their worst, sweeping the patio at 3am this morning with the outside lights on - it is a good job it isn't overlooked or someone would be reporting me for strange behaviour. I am struggling at work and I know I could really do with taking some time off but it is my own business and it is not that easy.

Anyway enough moaning from me I am 8 days off Pramipexole and 8 days closer to getting some relief - there is a silver lining in this current cloud which is looming over me !!!

LotteM profile image
LotteM in reply toCed60

Ced. I am impressed. Keep going. You can do it and it will get better. 💪🏻

707twitcher profile image
707twitcher in reply toCed60

If side effects aren’t bad for you, I’d try increasing the dose slowly. Maybe even just one extra pill, bringing you to 1mg. If that helps some, then you’ll at least know better which direction to go. If it doesn’t help, then maybe you need to try methadone or hydrocodone? I think we all wind up experimenting a bit until we find what works.

Grazesgrass profile image
Grazesgrass in reply to707twitcher

Recently started on low dose methadone ( 5 MG) after 30 years of severe RLS and trying every medication available. Next step is to slowly wean off the Mirapex! I hope the methadone helps me to do this.

Ced60 profile image
Ced60

just woken from an hours sleep with the help of an additional Buprenorphine.. is is 2am and I’m pacing the kitchen, Hopefully they will calm and I can grab another hour before morning

I

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