Medication for RLS

[Christine09]

I have suffered with restless leg syndrome for 25 years. It took the doctor to diagnose it over 6 years of suffering. I was asked if I wanted to trial a tablet called pramipexole (more common use for Parkinsons disease) now have a nights sleep through taking pramipexole with 2 co-dydramol and a low dosage of amitriptyline (10mg). If I don't have pramipexole I don't sleep and I have to say they have changed my life. Hopefully it may be an option for others out there.

[Madlegs1]

What is the dose of Prami?

Would you consider going without the Amitriptyline? Many people find it actually gives them rls.

Cheers.

[Hidden in reply to Madlegs1]

Hi Madlegs! How’s it going?

Take care,

Jess3648 (wasn’t going to change my username, but that’s how it worked out....)

[Madlegs1 in reply to Hidden]

I'm good thanks Jess. Still living! 😎🤗

[Hidden in reply to Madlegs1]

Yay! Three cheers for living!👍

[Christine09 in reply to Madlegs1]

Hi Madlegs, I am only on a small dose of amitriptyline and it hasn't affected me......yet !!! I take 4 pramipexole a day 0.088mg per tablet and could not live my life without them.

[Madlegs1 in reply to Christine09]

Thanks. Involuntary dancer has said ,far better than I could, what I think.

Please research augmentation and be very careful.

If you feel that the Ami is not causing harm, then you may be in the 1% who are not so affected.

All the best.

[involuntarydancer in reply to Madlegs1]

You are so good for my ego madlegs. One of my earliest memories of this forum is a prolonged and hilarious discussion between you and Raffs as to the possible business opportunities of selling freshly bottled Irish air - you were comparing its benefits to those of a bar of soap in the bed. I thought 'I could never be as clever as those guys' so compliments from you are treasure indeed.

[Madlegs1 in reply to involuntarydancer]

We treasure you greatly, ID. 🍀

[involuntarydancer in reply to Madlegs1]

This makes my day - well actually completes what was already a very enjoyable evening. Thank you.

[Madlegs1 in reply to involuntarydancer]

Only middle of the day here in New Zealand.!

Enjoying my grandchildren!

[Hidden]

Pramipexole is a great drug! As someone who loved Pramipexole for 4 years before having to get off of it, I’m always at a bit of a moral crossroads as to what to say to others who are enjoying this drug. So...I’m just going to ask you one thing. Have you heard of the word Augmentation before?

[Lizzy1968]

Pramipexole has worked wonders for me too. Can't imagine how I'd cope without it. I take 6 a day .

[Hidden in reply to Lizzy1968]

Hi Lizzy! Do you mind me asking your dosage?

[Joolsg in reply to Lizzy1968]

I agree with everything InvoluntaryDancer has written and second Sails in asking about your dose.

Augmentation is horrible and upping the dose of any DA is like throwing petrol on a fire.

[involuntarydancer]

To all on pramipexole - or any other dopamine agonist - please be aware that it needs to be treated with great caution. It is a fantastic drug for rls but it has a sting in the tail in that it can start to actually feed (worsen) the condition in a process known as augmentation. This is particularly likely as the dose increases (and it always increases if only pramipexole is used as a treatment).

Treated with caution the drug can continue to be helpful for years but it is VERY important to keep the dose as low as possible and anything higher than 2x 0.088mg tablets is FAR too high. The useful life can be extended by taking breaks when the dose ceases to be effective and temporarily using an alternative such as gabapentin/pregabalin or a mild opioid.

If you are experiencing worsened symptoms, a spread of symptoms to other parts of the body than the legs and/or an earlier onset of symptoms in the day, you are in augmentation and it is necessary to discontinue pramipexole gradually and use a different treatment.

If on a dose higher than 2x 0.088mg be vigilant for side effects such as sudden sleep onset (obviously particularly dangerous when driving) and impulse control issues such as compulsive shopping or gambling.

I continue to use pramipexole as part of my rls treatment regime so have not got a knee-jerk (as it were) negative reaction to it. I would now never increase my dose above 1x 0.088mg tablet per night and I take regular breaks. However I have also experienced first hand the awful suffering it can cause as well as seeing over and over again the dreadful impact it has had on others on this forum.

[involuntarydancer]

I should have said that it is also important to make sure to keep your serum ferritin at over 100 (or at any rate as high as possible) when taking pramipexole as there is a proven link (study is out there somewhere) between low iron levels and augmentation.

[camperqueen]

Hi I have been given a Pregabalin and take 200mg a day, 50mg at 1.30pm and 150mg at around 9.00pm, as well as 100mg Tramadol. My legs are better during the afternoon and evening but I cannot sleep more than 1-2 hours at night. I am slowly losing the ability to function with so little sleep.

Has anyone had such an experience with Pregabalin, can you help please?