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Restless Legs Syndrome

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pramipexole

Edward567 profile image
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I take Pramipexole. Why do other sufferers want to wean off taking it? Is there something better to take? What’s wrong with taking Pramipexole?

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Edward567 profile image
Edward567
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4 Replies
ChrisColumbus profile image
ChrisColumbus

Hi Edward: both Joolsg and SueJohnson warned you two years ago that pramipexole - and the other dopamine agonists ropinirole and rotigotine - eventually lead to the majority having augmentation which makes RLS worse rather than better. The fact that you "frequently RLS before tablet time is due so I take one so that I can sit down" suggests that you are already starting to suffer from this. (As an aside I note that you were also being checked every 3 months for haemochromatosis).

This article from RLS-UK talks about augmentation:

rls-uk.org/augmentation-reb...

Augmentation is why treatment with these drugs is no longer recommended by RLS experts. Unfortunately UK doctors are not trained in RLS and rely on outdated guidance from the NHS, although NICE and parts of the NHS have started to recognise the problem.

Jools suggested 2 years ago that it might be time to look at weaning slowly off the pramipexole to move to current treatment with pregabalin, gabapentin or low dose opioids. You must not come off pramipexole abruptly: it must be done very slowly and carefully. Look for further guidance from Jools and Sue before making any change.

Joolsg profile image
Joolsg

Because it feeds the disease. It actually causes the dopamine receptors in your brain to become over stimulated. This causes severe RLS. Much more severe than when you started the medication. You are taking 4 pills of Pramipexole. You are suffering drug-induced worsening of the disease, known as Augmentation.Until you get off Pramipexole completely, your RLS will never settle.

As you are in your 80s, your GP must monitor your withdrawal and ensure you have medication cover and supervision during withdrawal.

The previous advice we gave you two years ago is still relevant.

Tell your GP to read the RLSUK website on augmentation and help you reduce by half a 0.088 pill every 2 weeks.

He will need to prescribe either pregabalin or gabapentin to replace the Pramipexole. You should ask him to look at the medication table in RLS-UK website which sets out dosing and times.

Alternatively, a low dose of Buprenorphine would make withdrawal easier and avoid the worst of the brutal withdrawal symptoms.

Where are you in the UK?We can then suggest a specialist.

RCHD profile image
RCHD in reply to Joolsg

So agree… it was only after pramipexole use for several years , my husbands rls became a problem. Prior to that it was only intermittent.

Rosg72 profile image
Rosg72

I found that it was one where doctors were happy to keep raising the milligrams once you started to augment, I weened off of it which took months but also changed to pregabalin instead and I've had no problems, though I do take magnesium supplements to help and its now bearable.

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