Pramipexole

OMG! I have just discovered this sight and what an eye opener! My Dr put me on pramipexole about 4 months ago (0.08mg) and I went from 1 tablet to 2 tablets to now 3 tablets an evening. When I first started taking them I thought I had discovered a miracle, no longer was I writhing around on the sofa or fidgeting in bed (and we are talking - not in a fun way!) but I was calmly sitting enjoying an evening of relaxation rather than the nightly torment of either restless legs or even worse restless arms!!

Also the result of taking these tablets means most evenings I am asleep but hey - come the morning, sometimes as early as 4.30am - I am awake!!!

My Dr had previously tried me on Gabapentin but this showed no benefit at all.

Looking at the other posts I am thinking 'Should I really be taking this medicine?! Am I heading for a nightmare a bit further down the road?!!'. I am sure if I went to my GP and said I was augmenting (which it looks as if I might be) he will probably just try me on something else.

I am very disappointed in the information that has to come to light as I really was hoping I had found something to take away the symptoms of this awful syndrome as I have now been suffering on and off with this for over 40 years.

6 Replies

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  • I do so sympathise. I was taking pramipexole for around 12 years or more and yes it was a miracle. I was lucky I went so long before it turned against me. I'm not sure you should be taking 3 but there will be others soon who will give you good advice. Best wishes.

  • Yep- three ( .25) is about the max for rls.

    As Keiralee says- you could get 10 years out of it , or 10 months.

    Don't be worrying about the future - each day brings it's own baggage.

    Just don't let anyone persuade you to up the dose anymore.

    Good luck in your newfound life.

  • Just like you describe, Pramipexole worked like a dream for me for many years. Unfortunately I didn't know about augmentation and merrily increased my dose until it was way over the recommended limit. This meant that I had a bad time coming off it. However, if I had come of pramipexole earlier, I would have had to deal with the difficulty of finding a workable regime with other drugs sooner. My regret is not that I took pramipexole in the firts place but that I didn't know not to increase it.

    In your shoes, I would enjoy the pramipexole while it is working and just be sure to use something else to boost its effectiveness if you find symptoms starting to break out. Maybe even reduce your dose - although it may feel counter-intuitive - if symptoms get worse and use something else (tramadol or another opiate or kratom or cannabis or whatever you find that works) to take up the slack. Don't worry too much about it now - enjoy the absence of the horrors and deal with the future when it happens.

  • Thank you. After over 40 years of dealing with RLS, relief, if maybe only brief is welcoming. I know sufferers will empathise with my endless attempts at copper bracelets, elasticated bandages on all 4 limbs, very sexy lol, quinine, standing on cold floors - yes the list is endless :-(

    I have 3 beds in my house and the number of nights when I move from bed to bed to try and find comfort in order to get some sleep - aaargh!

    So, yes, I shall enjoy pramipexole until the effects are of an adverse nature. Have just sent off for an iron supplement hoping this will help as well.

  • I totally relate to your bed merry-go-round system. To add to your list of copper, quinine etc, I find stretching exercises (like yoga) can provide temporary relief - enough to get you back to sleep for a while. I also use epsom salts in a hot bath sometimes and sometimes sleeping with my legs propped straight up against the wall (turning round in bed so that bum is against headboard) or lying with my knees tucked up under me on my front.

    Have you had your serum ferritin levels checked? It is a simple blood test. US rls experts recommend getting levels to over 100. It does not work for everyone but I understand that it is helpful for the majority of rls sufferers. I am convinced that raising my levels - they are about 80 now - has helped my symptoms a lot.

    Just be alert to the problems that pramipexole throws up and don't increase your dose. If you can persuade your GP to it, it might be worth getting a prescription for opiate type meds to have them in for the odd occasion when pramipexole is less effective - or to use so that you can start coming straight down off pramipexole if you notice any augmentation setting in.

  • I've been suffering with RLS all my life and it was getting unbearable. My doctor finally agreed to presvibing me pramipexole. I've had to increase to 3 tablets each evening under the guidance of my GP

    I still suffer RLS for a few hours before going to bed, but they do tend to settle once I go to bed!

    However being tired on nights, sitting in the cinema, plane/ car journeys my RLS continues to drive me insane!

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