Staying on low dose of Pramipexole

[Sueloops]

I wrote on here a few weeks ago, about wanting to reduce my Pramipexole, then getting no sleep because my uninformed doctor thought I could get down to the very minimum in just 9 days. So just to update on all of this, I have decided to stay on 0.18mg (1 tablet) per night for the foreseeable future. I am sleeping properly every night, which to me means everything. I take my tablet around 6.30pm and some days the RLS kicks in for maybe just half an hour. Other days it takes just over 2 hours for the pill to work so I'm having to move around a lot as I cannot sit. But it's worth it because I can sleep!! I daren't think of trying again to come off Pramipexole altogether and I'd be so afraid of side effects of other drugs so I'm staying on it for now. I know there's a danger that it will cease to be as effective after a while, but will have to cross that bridge when I come to it.

[Joolsg]

If it ain’t broke don’t fix it. If you’re sleeping through the night & only getting RLS for a while then keep doing what you’re doing. Long may it continue.

You may get several years like this which would be brilliant.

[Sueloops in reply to Joolsg]

Thanks Joolsg. 😊

[Madlegs1]

That sounds fair enough.

Is that dose 0.18mg or 0.088mg.

I know doses vary in different parts of the world.

If it's the lower, you should be ok for a while.

Also keep a watch on triggers.

Good luck.

[Sueloops in reply to Madlegs1]

Thank you! The dose is 0.18mg which is in the form of a single tablet, and which practically equates to 2 of the 0.088mg tablets.

[Madlegs1 in reply to Sueloops]

Thanks.👍

[TWW11]

I take two doses of Pramipexole, One at 5:30 pm then the other at 8:30 pm. The dose each time is 0.125mg. My tablet comes whole as in 0.25mg, and so I just take half each time. Been doing this for nearly 4 years now, nothing's perfect, but for me, this seems to work. No trouble sleeping, early onset sometimes around 4:30 pm so I just take half then and stretch it out to 8;30 pm if it works otherwise, I take the second half around 7:30 pm. All's good.

[Sueloops]

I'm still doing OK on my one dose of 0.18mg Pramipexole taken at around 6.30pm and it's been 3 weeks now. I am not RLS-free but if I get it during the day it seems easier to manage as I can get on and do housework or walk my dog, and it goes away. At night if I'm lucky I can be OK as long as I don't sit for too long, but having taken my tablet then I absolutely know that I will sleep through the night which is a godsend.

[Whymelord in reply to Sueloops]

Hi,I too am taking 0.18mg of Pramipexole,I also take 1 magnesium tablet and 1 gentle iron tablet with a glass of pure orange daily,I'm not rls free but its definitely eased off in the past few weeks, here's hoping it continues. Good luck.

[Cather]

After being on pramipexole for about 25 years, I was up to .75 mg and even that was becoming ineffective. I weaned myself off slowly until I was on nothing for rls. I stayed off for 6 months, but was getting only 4-5 hours of sleep a night. So I went back on at .125 mg. once a day at about 8:30 pm. That was two years ago. I am still on .125, but can stay on by taking "a drug holiday" about every 5 months. I stay off the pill for 10 to 14 nights. Then I go back on. Taking "a drug holiday" is difficult, but I have been able to do it by choosing the two weeks carefully, setting tasks (from knitting to cleaning) that keep me distracted during the nights I cannot sleep. The first 2 to 3 nights, are bad, but then I begin to get some sleep. Researchers at Johns Hopkins Hospital tell me that what I am doing is okay. I hope this helps others with rls. It is a terrible disease to manage.

[Sueloops in reply to Cather]

Thank you for relating your experience - though I've never heard of anyone taking a drug holiday and wonder why you would go through letting your body get used to no drugs only to go back on them again each time. I am still taking my one Pramipexole at 6.30pm daily, but I have to make sure I stay active for a couple of hours after taking it otherwise the RLS still starts up if I'm just sitting down and the tablet doesn't take full effect until after 3 hours. I still sleep well then, but sometimes have RLS as soon as I awake on a morning. My doctor is reluctant to change my medication and has referred me to a consultant who I'm going to see the day after tomorrow. I don't know what to expect - she is a specialist in movement disorder. I honestly don'tget RLS as badly as many folk in this forum, but it is ever present. Will see what she says.......

[Lapsedrunner in reply to Sueloops]

The reason that people sometimes take “holidays” from pramipexole is to maintain its effectiveness and stave off augmentation which is all too common with dopamine agonist drugs (pramipexole belongs to this group) Don’t be tempted to increase your dose of pramipexole if it seems to not be helping anymore (or if symptoms start earlier in the evening or spread to other body areas

[Sueloops in reply to Lapsedrunner]

Thank you - I didn't think of that, and I can see how it's got to be preferable to increasing the dosage.