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Restless Legs Syndrome

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How long would you expect pramipexole to work?

John_au profile image
15 Replies

Hello!

I have been given pramipexole 0.375mg ER. I am trying it to see whether I have rls or not.

How long does it take to work? I took it last night and it didn't make any difference to my symptoms. Should I expect it to take weeks to work?

Thanks for the advice. Im just making this post because the more people the better to comment on experience.

Thanks

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John_au
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15 Replies
LotteM profile image
LotteM

No. It should work right away. And 0.375 mg ER is not a low dose, so that cannot be an explanation for your continued symptoms. Until several years ago effective treatment with a dopamine agonist like pramipexole was one of the diagnostic criteria.

Moat likely, you don't have RLS. Also, I second all Manerva's replies to tour previous post.

John_au profile image
John_au in reply to LotteM

Is it a high dose? My doctor said go up to 0.75mg a night if no relief is found?

Madlegs1 profile image
Madlegs1 in reply to John_au

He is woeully ignorant of rls protocols for Prami prescription.

0.25 mg would be absolute max, and would have an effect the first night.

If he had started you on 0.088 mg and to titrate up from there until you got relief ( to max 0.25) then I could respect his ability.

Check out peripheral neuropathy.

Good luck.

LotteM profile image
LotteM in reply to John_au

Read Madlegs reply. Spot on.

Amrob profile image
Amrob

It was instantaneous for me.

Also, I was prescribed up to 0.5mg for the two separate time periods that I was taking pramipexole (by my sleep specialist who stays on top of the latest research) so am surprised to hear of the 0.25mg ceiling discussed here.

I note that the landmark 2014 study comparing pregabalin with pramipexole used pramipexole doses of 0.25mg and 0.5mg.

in reply to Amrob

Hi Amrob, studies after 2014 might corroborate the many sources that now recommend that a) α2δ ligands are the preferred first line medication NOT dopamine agonists and b) if DAs are prescribed the dose should be kept to a low a dose as possible

Studies comparing pregabalin with pramipexole will probably have been comparing their "effectiveness". I have read that pregabalin is as effective as pramipexole in doses of 0.25, 0.5 and even 0.75 mg.

Effectiveness however, is not the issue.

The limitation on the dose of pramipexole is because the higher the dose of pramipexole, the higher the risk of augmentation. This is also the reason why α2δ ligands are preferred.

I was told I could take 0.75mg, so I did - suffered dependency and augmentation for years.

Personally, I would never recommend that anybody even contemplate taking any form of DA without first trying an α2δ ligand.

Amrob profile image
Amrob in reply to

Thanks Manerva, I suspected that might be the case. I first took pramipexole a few years ago (around 2013) so it must be the case that prescribing guidelines have changed since then.

in reply to Amrob

Some have, but these things take time to get around. Older guidelines recommend DAs and alpha2delta ligands equally, but the most up to date recommend the ligands be tried first. Then if they don't work a DA.

This is not because of their effectiveness, the ligands aren't as immediately effective as the DAs and, I suspect, they're only equally effective when they are effective.

It is now well recognised that augmentation is a major problem with the DAs.

As I previously wrote, you would expect pramipexole to work the first time you took it for RLS. It did for me and many others have had the same experience.

I believe it takes 6 - 8 hours for an extended release version to reach its maximum level in the blood stream.

I understand that if a neurologist tells you that you have RLS , you might feel a pressure to believe them.

However, bearing in mind the symptoms you previously described, one explanation of the apparent failure of the pramipexole is that you don't have RLS.

Not knowing one way or the other is, I appreciate, anxiety provoking, but you're not going to get a quick answer to what ails you.

Your options remain the same as I previously outlined.

Trubs profile image
Trubs

I took ever increasing doses of Pramipexol, trying to stop rls until I requested to come of it. I am now taking a mixture of drugs - Baclofen, Clonazepam and Gabapentin. These work well unless I’m stressed or very tired.

in reply to Trubs

Hi Trubs, great that you've found a solution for your RLS.

Unfirtunately, as you can read, these may not work for John-au, as it doesn't appear he actually has RLS.

John_au profile image
John_au

My doctor has now asked me to try rohiphol 0.5mg and then will refer me on. Would I also expect this to give instant results?

Joolsg profile image
Joolsg in reply to John_au

Yes- same applies to Ropinirole as Pramipexole. As you don’t have the overwhelming urge to move and you sleep without being disturbed, I totally agree with Manerva. You don’t have Rls so I don’t know why your doctor is trialling another DA.

Ask to see a neurologist as the buzzing you’re experiencing is not RLS, but you should find out what it is .

John_au profile image
John_au in reply to Joolsg

My doctor is a neurologist. He said reprieve (ropinirol)worked better than siftol(pramipexole). I don't know whether to even believe that? I find it very hard to know what to believe anymore

Joolsg profile image
Joolsg in reply to John_au

I totally understand. As someone with MS and RLS , I’ve seen my fair share of useless Neurologists over the last 25 years.

However, the urge to move is the main criteria for a diagnosis of RLS and you don’t have that. On a positive note, it’s one more disease to cross off on the journey to find out what’s causing the buzzing symptoms.

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