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Restless Legs Syndrome

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Pramipexole

Woody4 profile image
25 Replies

Pramipexole was just prescribed. Taking me off the not working roprinole. What do I need to know about it??

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Woody4 profile image
Woody4
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Pam34 profile image
Pam34

It depends why you have stopped taking the pramipexole. If it’s because you are augmenting then replacing it with another dopamine drug is unlikely to solve anything - you will very swiftly augment on that too. If it’s simply because pramipexole wasn’t suiting you then you may be ok. Remember to keep the dose as low as possible and if symptoms get worse or start earlier in the day do not be tempted to increase it.

Good luck

Pam

in reply to Pam34

Pam,

The way I read Woody’s post is that he is just starting Pramipexole because the Rop quit working and he wants a «heads up» on what to expect.🙂

Pam34 profile image
Pam34 in reply to

Whoops! I guess it still applies but the other way round!

Sorry Woody 😅

in reply to Pam34

Yep, still applies. Even so, I still thought you’d want to know.

Pam34 profile image
Pam34 in reply to

Yes thanks. Stops me looking stupid 😂

in reply to Pam34

You’re welcome. That’s what I’m here for.🙂

Just thought it was funny. I read Woody’s first sentence, then your response, and though «wait a minute...»😂

Pramipexole can have the side effects of augmentation and various compulsive behaviors.

Pam34 profile image
Pam34

Hi Woody

I got the meds the wrong way round! Same advice though 😅

Woody4 profile image
Woody4

What I was told if it doesn't work too increase to 2. If then it still doesn't work to call and we would go to another. He told me what it was but I don't remember.

Pam34 profile image
Pam34 in reply to Woody4

I’d be reluctant to increase it. Why are you coming off the ropinirole? You say it’s not working - in what way?

Woody4 profile image
Woody4 in reply to Pam34

I take one ropinirole, sleep 2/3 hours and wake up, with usually arms going nuts. Go up to 2 ropinirole, sleep 2/3 hours and really go nuts.

Pam34 profile image
Pam34 in reply to Woody4

I’d read Jools reply below and read up on augmentation. You can then make an informed decision on the ropinirole and pramipexole.

Joolsg profile image
Joolsg in reply to Woody4

RLS has moved to other body parts so clear indication of Augmentation.

Therefore do NOT take another dopamine agonist as you’ll augment again and quickly.

Read all posts on Augmentation and watch the video on the main page of the RLSUK website .

Joolsg profile image
Joolsg in reply to Woody4

You have to wait at least a week to see if it's working. Do heed Pam's advice as Augmentation & withdrawal are horrible and can be avoided by sticking to the lowest possible dose and not increasing the dose. What dose of Ropinirole were you on and what dose of pramipexole have you been prescribed? The meds leaflets are out of date.

This is an extract from an article by one of the leading RLS experts, Dr Buchfuhrer. You can read the entire article at:

ncbi.nlm.nih.gov/pmc/articl...

"Both of these drugs should be started at their lowest dose (ropinirole at 0.25 mg and pramipexole at 0.125 mg) and increased if necessary every 5 to 7 days by their initial dose until symptoms are controlled. Although the FDA-approved, maximum doses for ropinirole and pramipexole are 4 mg and 0.75 mg, respectively; many physicians exceed this dose, especially when treating daytime symptoms that may require 1 or 2 additional doses per day. However, after 10 to 15 years of experience with these drugs, concerns regarding augmentation of RLS symptoms by these drugs have made many RLS experts rethink the doses used to treat RLS, and even whether these drugs should be first-line drugs of choice for this disease. Due to concerns regarding augmentation of RLS, In the opinion of this author and several other RLS experts, the maximum doses of dopamine agonists should be much lower than the approved FDA doses (such as 0.25 mg for pramipexole and 1 mg for ropinirole). However, augmentation may occur even at the lowest doses of dopamine agonists."

The doses for pramipexole are US (different to the doses prescribed in the UK) so for 0.125mg substitute 0.088mg. Confusing!

LotteM profile image
LotteM in reply to Joolsg

Joolsg, you found it! The paper that mentions the lowest doses of 0,25mg for pramipexole and 1 mg dor ropinirole that should be used as maximum doses. Well done.

And published already in 2012....

Joolsg profile image
Joolsg in reply to LotteM

I know- I’ve bookmarked it now. I have searched and searched before and it never showed up but this time I put in dose of pramipexole as my search details and it showed up.

The only problem is that it refers to Dr Buchfuhrer’s ‘belief/view’ which gives drug companies and the British Association of Neurologists the ammunition to say they disagree- despite overwhelming anecdotal evidence that dopamine agonists will cause Augmentation for 80/90%.

I’ll now send my letter! But will send a draft to you first.

J.

Pam34 profile image
Pam34 in reply to Joolsg

I’ve bookmarked it too!

Pam34 profile image
Pam34 in reply to Joolsg

That’s brilliant work Jools. I’m saving that link! Thank you 😊

SydneySooty profile image
SydneySooty

After two weeks, got off of them. The side effects were horrible. I had migraines, night sweats and nightmares. The sleep deprivation led me to a psychosis.

Joolsg profile image
Joolsg in reply to SydneySooty

Yep, it’s torture. I had PTSD for about a year after withdrawal. I couldn’t sleep without lights on and had panic attacks and anxiety.

Drug companies don’t tell us any of that!

Pennyfarthing profile image
Pennyfarthing

I augmented on ropinarole also and was put on pramipexole which I've been on for 3 years, with no bad side effects. Good luck

Joolsg profile image
Joolsg in reply to Pennyfarthing

That’s wonderful news. You are one of the few RLS patents who has not augmented again quickly on another dopamine agonist.

grandmahelen1 profile image
grandmahelen1

It works

Woody4 profile image
Woody4

Pramipexole Dihydrochloride is this the same med

Joolsg profile image
Joolsg in reply to Woody4

yes

medicines.org.uk/emc/produc...

The drug is called pramipexole dihydrochloride monohydrate and it's sold under brand names mirapex or sifrol

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