Ropinirole: I have had rls for a long... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinirole

daisyw profile image
12 Replies

I have had rls for a long time, it's a family thing. Unfortunately it has gone severe over the last few months and my arms suffer as well as my legs. I visited the doc and he was very understanding, he prescribed ropinirole, I've to take one per evening for 3 days then take two per evening. My problem or not, depending on how you view it is, that I had the best nights sleep ever last night , I slept the full night without a twitch. Do I really need to take two in three days time It might put me to sleep for 24 hrs :)

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daisyw
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12 Replies

hi, when i was prescribed them, i had the same experience with them, and as you will most likely have to increase the dose later, seems silly to increase it when you dont need to, i know i didnt, and i stayed on the one at night for quiet a while. What dose are you taking ?

jean

daisyw profile image
daisyw in reply to

hi, thanks for answering. i'm taking one .25mg per night. he's given me the starter pack

hi, i didnt get a starter pack, just gave me .25 ans told me to take 1 a night for a week, then two and see how i went, but as the 1 worked, i stuck with the one, and increase it myself, when i needed to, think it was around 8-10 months, before i had to do that, i was increaseing the dose, with my doctors help, until i eventaully had to come of them, it caused augmeantation, so i didnt really have a choice I had the neupro 24 hour patch after that, but now im taking mirapexin, and its not working to bad at the moment

jean

daisyw profile image
daisyw in reply to

Hi

So how long were you on ropinirole before you had to change?

augmentation pls explain

hi, well i was taking ropinerole for roughly 2 1/2 years, before a had to change meds, and augmentation, is when the meds actually make the rls worse, it can start earlier in the day than it usually does, so then its best to change your meds, as this will only get worse.

jean

wicksgang profile image
wicksgang

Hi, I did the same. I started on .25mg and had the best nights sleep for years! After a week I built up as the Doctor suggested until I got to .75mg. I am now on 1mg per night and I sleep really well but still get rls in the evening. I saw another Doctor a month or so ago and he suggested that I stop with the ropinirole and take quinine - it was awful and totally ineffective, so am back on ropinirole at 1mg.

Always take a medication at the lowest dose first.if that works then no need to increase it until you need to... If you can keep the dose at the lowest for as long as you can if it works. then thats best. Augmentation is also when you need to go higher and higher on the dose to get the same relief. And as Jean said, the medication seems to turn against the RLS and symptoms become worse and earlier in the day...

The worse meds that seems to cause augmentation are the dopamine agonists...

Tpebop profile image
Tpebop

This is a very interesting and useful topic. I was thinking that the 3mg/24hr Neupro patches I was using either weren't working or they were a too high a dose. I was having to increase my dose of Mirapexine (the drug I was using before the patches) to alarming levels to get relief. So, I might try reducing the Neupro to 2mg/24hr as one of you suggested and asking to go onto Ropinirole as these comment suggests it's a wonder drug (well at least while it works!). The starting on low doses and then working upwards seems wise counsel, perhaps I was going for overkill by trying higher doses of things first. Thanks to you all. My Sleep Doc is being most helpful at present but my GP is being a bit of an a***hole. It goes on!

smiling profile image
smiling

as sure as night follows day you will have to increase the dose i myself started on .25 now on .75 of ropinirole i have arrived at this dose in around 6months but i have reasonable sleep at the moment but most evenings i have some discomfort for approx 30 minutes ,my gp informed me i could increase the dose upwards to a max of 4.0 giving me the decision to medicate myself,i have found quinine does not work but it does work for some people!!!

Sarasneakers profile image
Sarasneakers

Hi, I wish I had asked this question this time last year. I had PLMD, sleep apnoea and finally RLS therefore began ropinirole last summer. Like you on 0.25 I had the best sleep I could recall and loved the drowsy affect at bedtime. I increased weekly finally settling on 1.25 with a drowsy affect and fab sleep. What I didn't understand was why I began to experience RLS earlier in the day and worsening symptoms with secret binge eating and eventual weight gain. As soon as I understood the augmentation and eating side effects I tried to reduce and it was hell. It took me ages but I finally reduced and now take the lowest dose of pramipexole with half a clonazepam which seems to work and thankfully my RLS has returned to the level I had before the ropinirole. But if anyone had mentioned the augmentation to me before I would have stayed on the lowest dose as long as humanly possible! Good luck, s xxx

Just remember folks, cause one person swears by the med they are taking to be magic for them doesnt always mean it is the drug for you. Always remember that its all trial and error when looking for the "right" med which will suit you..

We only give our experience on what we have used and whether it has worked for us., or in most cases what hasnt...

daisyw profile image
daisyw

hi

sorry i havent joined in as i asked the question initially, but i have been away.

thankyou all for your help and explanations to a ropinirole newbie.

i've had a chat with my local chemist who also says ''if one is doing the job don't increase the dose'' mind you he also said it wasn't habit forming!!!!

i'm going to stay with the one tablet for as long as i can and then decide whether to stay with it, i don't want to get hooked or kick it into touch and go back to the RLS :(

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