Pramipexole : Hi all I’ve had rls for... - Restless Legs Syn...

Restless Legs Syndrome

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Pramipexole

Hoochybaby profile image

Hi all I’ve had rls for years now with a lot of ups and downs I’ve been taking pregabalin and codeine now for some time but no longer effective my neurologist has put me back on to Pramipexole but I’ve been reluctant to take because of augmentation in the past but I’ve not got many options left and I’ve suffered badly with rls and insomnia I’ve been walking around the bedroom at 3am trying to get some relief and become tearful with tiredness

I have become frightened of Pramipexole but I’ve taken my first dosage tonight of 0.088mg and hopefully I’ll get some relief but with trepidation

12 Replies

I’m still up too it’s 11:45. I’m trying to come off Pramipexole slowly, down to 3 pills of 0.088.. I was on 4. I am very apprehensive what to expect as dosage gets lower, so far it seems to have improved with lower dose which is odd but I’m sure something will change.My GP doesn’t know much about RLS but has give me Pregabalin to use instead, haven’t started it yet though..

Are you in UK ?

Hoochybaby profile image
Hoochybaby in reply to Doings

Yes I’m in the uk

I’m exactly like that walking the floor as my legs won’t give me any relief and I also take pramipexole as well as I take 2 tablets a night but sometimes they don’t work 😔 plus when I’m very tired and haven’t slept the night before I get very emotional too wishing it would all go away give me some relief.

I can sympathise with you iv been exactly the same night after night and although it’s unmanly to cry I’ve sat on the bad at 3am and cried!

I seems like you are at a crossroads. I hope you have investigated the role of iron in RLS. Low Ferritin (iron storage protein) levels - regardless of the cause - can cause RLS. I was given blood tests and said my Ferritin level of 49 was "Normal" - Ha, not really - iron supplements quickly took away the severe RLS. The docs waved DAs at me and I resisted due to info I have read here both on side effects and augmentation.

Sorry to hear of your continung problems.

I think yoursituation is the same as the last time you posted.

I believe your current dose of pregabalin is less than a third of the maximum. It could be increased. However, since you augmented on pramipexole it isn't as likely to wrok.

Codeine is only a weak opioid there are better ones forRLS.

Pamipexole is th worst DA for augmentation.

It could take some time but I suggest you ask for a referral to a specialist, you do fit the criteria for this.

That is -

When should I refer someone with restless legs syndrome?

Consider referral to a specialist (either a sleep specialist or a neurologist) if there is doubt about the diagnosis or if treatment is unsuccessful. The European Restless Legs Syndrome Study Group task force defines unsuccessful treatment as:

1 An insufficient initial response despite an adequate dose and duration of treatment.

2 The response to treatment becomes insufficient after a time despite an increased dose. 3 There are intolerable adverse effects.

4 The person reaches the maximum recommended dosage and treatment ceases to be effective.

5 Symptoms suggestive of augmentation become apparent.

cks.nice.org.uk/topics/rest...

Hoochybaby profile image
Hoochybaby in reply to

Hi ManervaThank you for your reply I always value your input

Last night I took one tablet 0.088 of pramipexole and also 150 mg of Pregabalin. I slept really well the best a long time and my rls was non existent I know this will probably not last but my neurologist said that because I had a a long holiday from pramipexole I could resume taking it again. She is going to contact me again in about a month to see how I am progressing. I think I will reduce the Pregabalin to 75mg tonight and see how I go on.

What are your views?

in reply to Hoochybaby

Sorry I hadn't realised that it was a neurologist that suggested the pramipexole.

It's a shame, the reason I suggested a referral is that a neurologist can suggest options that a GP would be reluctant to do.

It seems your neurologist hasn't.

There may be no harm in requesting a stronger opioid if you wish. They can say no.

Targinact is licensed in the UK for

"Second-line treatment of symptomatic severe to very severe idiopathic restless legs syndrome after failure of dopaminergic therapy"

bnf.nice.org.uk/drug/oxycod...

Hi, I've been taking Pramipexole for 15+ yrs with no augmentation. I know it happens but, my point is it does work very well and for some like myself for a very long time. I have severe symptoms getting rls in my legs and arms if not treated. I have had to increase the dosage twice over those years. But, in the last 3 I don't have to take it during the day anymore. I can actually nap without getting it. Only have to take it at night before bed. Also keeping my ferritin levels high with diet and supplements. Just my story thought it might ease your fears a little.

Hoochybaby profile image
Hoochybaby in reply to SlickNC

That’s good to know what dosage of Pramipexole have you been taking and what do yo currently take?

SlickNC profile image
SlickNC in reply to Hoochybaby

I started on .25 mg twice a day once in the afternoon and one at bedtime originally. At some point they bumped it up to 1 in the afternoon and 2 at bedtime. For the last 6 or 7 years I've been taking 4 .25mg pills a day 2 in the afternoon and 2 at night. Until the last few years when I moved across country and began to forget the afternoon dosage. At some point I started just taking all 4 about an hour before bed. I haven't had any symptoms in a long time unless aggravated by some other medication.

I have been on four 0.5mg pramipexole and four 300mg gabapentin for peripheral neuropathy and RLS for 7 years. Sleep 3-5 hours/night in 2-3 sections using a CPAP. Gained 50 lbs. Trying to go off P at 0.125mg per 2 week intervals for 32 weeks. When my feet and ankles go crazy, I get some relief using compression socks . Using a Sock Slider helps get them ON.

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