Sifrol Pramipexole restless leg syndrome

[Boss15]

I've been on Sifrol Pramipexole since February 2017 after having a sleep study where they said my legs moved 16 times through the night.

I had been suffering with insomnia for years and l was desperate to get some sleep, so when my specialist asked me to try sifrol pramipexole tablets l started with 0.125grams and l have stayed on this all the time even though my doctor wanted me to go higher but l wouldn't.

Has anyone been on the lowest does, like me. And have you got short term memory loss and some long term memory loss.

And had a higher sex drive.

When l get the nagging legs they get so uncomfortable so l use a spiky ball and a foam roller to help me.

My legs have always got pain if l press my calves.

I have slight varicose veins and l have read up that some people say this is the cause of restless leg syndrome, has anyone got this condition.

And have you weaned yourself off this amount without any side effects. Thanks

[involuntarydancer]

You did very well to resist your doctors exhortations to increase your dose. Personally I would never take more than the dose you are currently taking (unless suffering from parkinsons).

I am on 0.088mg which is the UK equivalent of 0.125mg pramipexole (the concentration in the tablets is different on this side of the pond). I previously took pramipexole for nearly a decade in ever increasing amounts until I augmented and discontinued it for about 18 months.

At my current dose I only notice a barely perceptible (and easily overcome) increase in dopamine related impulse control issues such as sex drive (in my case shopping - particularly online shopping - also). I wouldn't be aware of it at all except that at a higher dose, I experienced dramatic impulse control issues and I am now vigilantly alert for them.

I discontinue pramipexole intermittently for short periods (the longest I have managed is two weeks) in the hope of deferring augmentation. I tend to titrate down, taking half a pill for maybe 4 days, then a quarter for two more days and then stop. To date I haven't found the discontinuation difficult in the way that it was (like extreme torture) when I stopped from the large dose after I augmented. It is still unpleasant because my RLS symptoms return strongly and nothing really manages them as well as pramipexole other than a high dose of opioids which I don't want to take as I get opioid induced alertness and don't sleep.

I take naltrexone (about 8 or 9 mg daily) after reading the experience of one other sufferer who found that their pramipexole induced augmentation and impulse control issues were completely reversed by a dose of naltrexone (though admittedly they were on a much higher dose of naltrexone - 25mg I seem to recall). I think the naltrexone helps with my daytime alertness and possibly also with memory as I don't notice much impact on my long term memory. I take cannabis as an edible some evenings to help with sleep and I suspect this sometimes affects my short term memory but it is not certain - some days my short term memory seems unusually good even though I took cannabis the previous evening. The worst thing for my memory is lack of sleep.

I think that the purported link between varicose veins and RLS has been disproved and any suggestions that getting the veins fixed has resulted in improved RLS is not based on scientific research. I would hesitate to take this step in your shoes.

Iron - have you had your serum ferritin checked? If it is below 100 (make sure you get the actual figure - not just that you are 'normal') it is well worth starting a supplement. There is a link between low iron and the onset of augmentation and I understand that there may be a link between augmentation and impulse control issues though this is far from certain. Raising iron levels does help over 50% of RLS sufferers. Please forgive me if you are already aware of this as many people on here are.

I found that foam rolling actually made my legs much worse! Which only goes to show how different we all are. Other techniques that are recommended for when symptoms strike are: a very distracting activity such as a computer game, magnesium taken as a supplement or applied as a rub, hot baths, soaking legs in cold water, support stockings, gentle stretching exercises, a cup of coffee (works on adenosine apparently). Good luck.

[Boss15 in reply to involuntarydancer]

Thanks for getting back, do you know if Sifrol Pramipexole stop you from doing things around the house, as l have got know drive to want to say paint my house do choirs or other things to do with everyday life.

And you say get iron levels, l recently had a blood test and my doctor said my iron was good.

What do ask for from my doctor to have my iron studies different to standard.

And will l get Daws if l taper my dose.

I ask the company and my doctor about cutting the dose down to quarter and they say miss a dose inbetween instead.

I thought your way would better.

Do you start making Dopamine again when you drop the dose.

I read up that broad beans give you Dopamine.

And if you type in pramipexole bodybuilders on google

People are taking it for muscle building.

[involuntarydancer in reply to Boss15]

I never heard of taking pramipexole for body building before. Body builders seem to be drawn to the most dangerous unpleasant drugs! Neither had I heard about broad beans promoting dopamine production.

The advice to miss a dose between seems very strange - are you on a slow release version? That is the only reason I can think of not to cut the pill to reduce each individual dose. I would not worry too much about it though as you are on a low dose already. It's not impossible but I would have thought it would be unlikely that you will get DAWS given the relatively low dose you are on.

I don't think that I experienced the effect you describe of not having any drive or energy while on pramipexole. Being tired from RLS definitely has that effect on me.

I would be inclined to check with GP to see if it was a serum ferritin test he did in relation to the iron and I would also ask for the actual figure. They often tell us that our levels are 'normal', 'adequate' or 'good', when in fact they are not. Many GPs don't realise that RLS sufferers should have levels of over 100. Non-sufferers can have levels of as low as 20 and still be good but that is not the case for us.

[Boss15]

Hi everyone.

Update on my last letter, I went back to my Sleep doctor and now after him telling me about me reading on here about DAWS, So now his advice is we only get patients to take the low dose amount of Pramipexole Sifrol 0.125mg a day now, and its only since l read it on here and told him.

And his a Doctor, he said if you find its not working now, because l told him l'm not sleeping again, just miss it for a day he said.

I have missed it accidentally a few times and the RLS comes back tenfold.

But it did help get me back to sleep a little bit better, but its a pain in the butt as my sleep pattern goes back to waking up at 3am to go to the Loo then l can't get back to sleep again.

I think when you are on this tablet you have less empathy and less feeling of being who you were before you started taking it.

Oh yeah and he said just continue to take it, l won't need to see you again.

I'm thinking what a idiot he puts me on this drug then dumps me to work it out on my own.

I would like to know too if any one has had a brain scan from a Neurologist before and the results showed 5 white spots on the grey matter.

The Doctor said its normal it does't mean you have Dementia because of short term memory loss and some patients have a lot more then you.

So l am wondering if this maybe the problems with RLS because you have bleed spots on the brain.

My Ferritin level is 97 out of (30-300