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Restless Legs Syndrome

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Pramipexole side effects

StillStriving profile image
5 Replies

I've been on 2 x 0.88 Pramipexole for 6 months having spent all my adult life (I'm now almost 60) feeling tired during the day and very gradually getting RLS. I use a CPAP machine for central apnoeas, and then a sleep study showed that RLS/periodic limb movement was repeatedly waking me in the night.

The effect was wonderful at first, with my sleeping soundly for 6 hours and waking refreshed. The effect has tailed off since.

My main issue is that occasional/mild symptoms that I had before the Pramipexole have got worse but I don't know if they're related. I've searched side effect listings without success and from experience I know that they are not always complete.

Essentially, I feel crap (a bit like having a bad cold), lack energy and motivation, and have feelings of being suffocated that occasionally lead me to almost panic.

Does anyone recognise anything in these symptoms?

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StillStriving
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5 Replies
Joolsg profile image
Joolsg

When on Ropinirole ( a similar dopamine agonist) my nasal passages were constantly blocked making breathing difficult. If you use a CPAP machine you already have breathing difficulties so the pramipexole may well be making it worse.

Augmentation can happen in a short time but I’m not sure that’s what’s happening.

If the RLS is worsening, happening earlier in the evening and affecting other body parts like hands, arms, back, trunk or face then it is Augmentation.

In your case, I don’t think it is Augmentation yet.

Side effects are not always listed - anxiety and panic attacks can happen on any meds, including dopamine agonists.

I would discuss it fully with your GP. If the side effects are worse than the RLS the drug is supposed to be helping, explore other options. Pregabalin or Gabapentin may be useful- opioids can restrict breathing so not recommended for you if you’re using a CPAP machine.

StillStriving profile image
StillStriving in reply to Joolsg

Thank you. My GP is a bit clueless. I was put on the Pramipexole by a Sleep Centre doctor/consultant, so going back there is a good next step.

Parminter profile image
Parminter

Still Striving, you are augmenting. That is to say that the drug masks the symptoms in higher and higher doses while making the disease worse. And that is a very high dose of pramipexole (unless you have mis-typed) - the current advice is not to exceed 0.25mg.

In RLS we have sufficient dopamine but insufficient or poorly functioning dopamine receptors. The dopamine agonists hammer the receptors further, killing them off or 'internalising' them into the cells.

So over time we get worse and worse and take more and more - because our doctors have their information from drug reps, not from current science.

You have to come off it, and that is best done with the help of an opioid.

Google 'augmentation and dopamine agonists' and 'augmentation and RLS'. And search this site, there is lots and lots of helpful information.

Of course you feel like crap, dopamine agonists seriously mess with your brain. If your sleep is poor, your quality of life is poor.

And one of the serious side-effects of pramipexole that very few mention is insomnia, (search and you will find it, it was on my own package insert for pramipexole, and I did not sleep for years) - so you have several things to deal with - the RLS, the drug for RLS, and apnoea.

Don't give up. Finding a way out of this is not easy, but it can be done. Inform yourself and use this site to vent, and for information.

Jools says that augmentation will probably not happen so early on - my own experience is that it can happen almost immediately, on the lowest dose. And the DA certainly destroyed my sleep, utterly.

StillStriving profile image
StillStriving in reply to Parminter

Thank you. I did mis-type. That should be 0.088.

Hi there! I am sorry to hear that you're having such a tough time.

If I were you I'd go through all my medicines with your doctor. Drugs are tricky business because of side effects, then there's drug interactions if taking more than one, then there are other health conditions for you and doctor to keep in mind when prescribing your medicines. It's all just one big mess.

How understanding is your doctor of your current condition and does he/she know about RLS and the meds. associated with it?

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