ok so i have had RLS for nearly 10 yrs now i saw a nuro at kings collage. (cant remember name supposed to be the top man tho!) anyway he put me on the good ole pramipexole,, 1 pill at nite.. since then thats been upped to 2.. now its not working as it should again. my GP knows absolutely naff all about RLS and don't know if he can up the meds again and a referral back to kings will take forever as it did the first time..
in the mean time i am pulling my hair out, its driving me insane again and its not even just my legs now but my arms as well
has anyone had the meds upped past 2 i think i'm on 088mg pils
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I have upped my meds when i have needed to and i am on pramipexole, i only take 2 of the 0.088mg pills, i have tried to up it again but it makes me really dizzy in the day, and that is by cutting them and i tried less than a quarter extra. My doctor gives me lea way (sp) so i can adjust when i need to. The leaflet, gives you the info on how high you can go on the pramipexole.
Shame you doctor doesnt know naff all about RLS, he SHOULD know the doses used for pramipexole, its about time he learnt.
after being on this dose for all these years, I am quite sure you can go up, if you do not get side effects like Elisse. Lots of people take higher dose than that. It is amzing to me that that small dose worked for for 10 yrs! This class of meds can stop working rather quickly, so you are lucky it took this long, seriously. RLS is progressive, so it may be that your RLS is just getting worse and you need a stronger dose. How long has it been since you last upped it?
Hello there. Elise and night dancere are right. The meds don't work for ever. A lot of doctors do not know about RLS (GP's). I have been on pramipexole and the longer acting version mirapexin. That might work for you. Others in the range that are licensed include requip and rotigotine. I hear there is another patch now too. I couldn't tolerate any of these meds without bad side affects. The usual dose for requip is 4mg and is supposed to give relief for 24 hours. It may be you need to switch and I agree that your GP should pick up the BNF and learn about it. If pramipexole worked for you the longer acting version mirapexin might be worth considering. Couldn't yout GP ring the hospital or write to them? Also go to the sites www-rls-uk.org and wwwrlshelp.org. Let us know how you get on.
Hi I was on pramipexole 0.088mg for years I was aloud to take 6 per day that is the limit but I did take more when it did not work ! I have had no side effects with any of these RLS medications my body seems to adapt to the meds , anyway the pramipexole stopped working for me this year and now I am on the neupro 24 hr patch and it works great .
Hi: I am also on the Neurpro patch and it is working great. However, I have sleep issues so I take a small dose of ambien. I dont know which is knocking me out the next day the ambien or the Neupro patch. Do you have an side effects from the neupro patch??? Like so many here, I am at a loss with all this fatigue but at least I seem to have my legs under control. very frustrating for everyone. BTW. the requip worked for me but the side effects were horrible.
Hi I am taking 3 tabs at night - has to be before 8 or I don't get any sleep. I have been fortunate that when 2 didn't work I was able to up it. I have tried 4 but that didn't make the symptoms any better. I can't say that it completely stops it but without them I wouldn't sleep at all. The side effects do tend to be worse the higher the dose. I have experienced drowsiness which does affect my social life and nausea to a lesser extent. Hope you get the right meds.
.088 x 5 is the max for me. I can tolerate 3 very well. 4 works if I split the
dose by taking half at 5pm, and 8pm... 5 of them causes me to become
ill enough to vomit. (I have done that)
My doctor lets me decide what my max dosage is up to 5 per day.
Hi baccib I do not get any side effects from the neupro patch the only thing I have now is insomnia due to all these years with the tablets working sometimes and having the jiggy jiggy legs! It's great not feeling the RLS on these patches but like I said its the insomnia keeping me awake now
I agree with Rish it's the insomnia now that gets me. I am on 4mg neupro patch and half a 1mg requip and I sleep till about 4 am then its touch and go if I get back to sleep !
thx so much for the input guys @peterk when you mentioned mirapexin.. the name was familiar to me.. so i checked my boxes.. and some say pramipexole some say mirapexin so i had just assumed they was same thing but dif generic names.. are they same? or dif?
i did see there was a patch out so i think i will take some research in to gp (when i can get a damn appointment ofc that is!!) and ask about it.. in the mean time i will just take a extra tablet till i get to a dose that works.. thankfully have never had any side effects (cept the sleepyness) and i also have opiate pain killers that i take for my arthritis so they work to help knock me out as well .. well sometimes anyway
i think i will also get gp to maybe refer me back to that nuro at kings collage hosp again its been a good many yrs since i last saw him.. dr choudri or something was his name
It is tough Eileen you can't win you either have the RLS and no sleep or the medication that helps stop the RLS and then bang you get insomnia so no sleep again I feel so worn out and my husband has that sleep apnea and has a sleep machine but he can only tolerate it for a few hours then he takes it off and snors that keeps me awake to ! Sleep is important but most the time I don't get enough. We all seem to be in the same boat but some people suffer with much more its so sad and I hope some day they will help us and realise just how much we have to cope with.
Pramipexole and mirapixen are the same thing , I am taking 4 and some times 5 and now i take amitriptyline 25mg at night and have been getting a good nights sleep, worth a try
Its a bit confusing with the meds, Pramipexole and Mirapexin. they do both mean the same med. But there is a prolonged release one Mirapexin, that works for 24 hrs like the Neupro Patch, that is the same aswell but called Mirapexin rather than Pramipexole... Confused...!!!
I have RLS and take 5x 0.5 ropinerole per day which is working reasonably well but my problem is am I getting enough sleep as the purple rings around my eyes are most prominent . the best I can do is 2 to 3 hours then I'm awake and have a drink and give it half an hour then spend another half an hour getting back to sleep .I go to bed about 10.30 pm .I'm up about 7 am, I also produce to much acid so I have some Gaviscon which cools it down for a while . so is 5 hours a night enough , or am I expecting to much for an 85 year old.
5 hrs wouldnt be enough sleep for me, well not every night. Sounds as if the ropinerole is starting to not work so well...
Doesnt matter what age you are, its how much sleep your body needs is whats important.
Hi, I can't believe you saw the top man and he just said Pramipexole! Like everyone else I keep thinking there must be a straight forward solution, but after reading so many people's stories there just doesn't seem to be.
Anyway I started on Pramipexole in December, o.o88mg x2 in the evening and was overjoyed with the results, great nights sleep, but then slowly it started to come back earlier and by March I had upped it to 3, then by May I tried 4, this seemed OK and my doctor said I could go upto 6. But I kept finding that my spacial awareness had got bad, banging myself on things and having lots of bruises! So now I have reduced to 3 again but it is so bad in the evening it's driving me nuts again!!!!
I am going through lots of alternative solutions as well as the meds, flight socks, cold wraps, magnesium spray, not much luck, but I'm determined to find the solution 😊
Good luck to everyone and I really appreciate hearing everyone's thoughts
I really would love a solution, so are you saying reduce the meds and go out in the sun? Also go on a calorie reduction?
My only other meds are small dose for high blood pressure, I try and eat healthily and I maintain my weight, also everyday I am outside, walking to work and walking the dog. How much of a calorie reduction are you talking of?
I have had this condition from a teenager and am now 50, it has been progressively getting more frequent and longer, to now having it every time I sit and relax
I have been searching for ideas on how to increase my dopamine levels and came across universityhealthnews.com, 8 ways to increase dopamine, found it very interesting. I am trying to keep to 3 tablets now, try all that I can naturally and try to reduce meds, funny you should say about menopause, I am peri menopausal, this could be making it a lot worse, I guess, especially as I usually are down on my iron levels, but then have tummy problems if I take it. Which could also relate to the magnesium!
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