What did you do after Ropinerole?

Can anyone advise the action they took after they had to stop taking Ropinerole?

I have reached the stage, because of augmentation it is not effective. I am now on 4 x 1mg per day and been on the drug for about 6-7 years.

My GP is quite sympathetic, but like most does not a great deal about it. The neurologist I saw about 2 years ago was happy to keep increasing the dose!

Would asking for patches be the answer? I have never found Tramadol to be effective.

Is there any other drug I could now request?

Please share your experiences ( hopefully successful ones!)

29 Replies

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  • If you are in the UK Targinact, (oxycodone & Naloxone) is licensed for RLS treatment, if you have a sympathetic GP then he should have no bother prescribing. You can also try drugs like Lyrica or Gabapentin.

    There is treatment info here:

    rlshelp.org

    click on the treatment link along the left.

    good luck.

  • Thanks for reply , yes in UK, will look at site

  • You can also visit the RLS-UK website if you have not done so already. rls-uk.org

  • You could try Targinact, Gabapentin, Pregablin ( Lyrica ), plus some find adding in Clonazepam. I augmented and after 12 months off dopamine agonists I was able to go on to the Neupro patch. Been on it 4 years and augmentation has not happened again Steer away from any short acting Dopamine Agonists meds. ..good luck x

  • If you are augmenting on the ropinerole then its not wise to change to another dopamine med, you will just augment on the one. Its usual to change to a different class of med. Looks at the websites that have been posted on here and see the other options to take.

  • Scottie99I have been through everything my-self the only thing which I got rid of the beastly news was with Dilaudid.I am allowed codeine now but my GP will not prescribe it.Am currently taking tramadol and lyrica which is about hopeless so have invested in the Relaxis pad.3nights so far which has not ameliorated anything so far but seems it needs a month to give any relief.Will keep posting.yours in hopes.

  • Hi Scottie, I'd like an answer to this one too. I'd be very interested to hear how you get on with the Relaxis over the next month. The consultant I saw 15 years ago said I can go up to 6mg/day. Ropinerole has been very good but I'm on 5 at the moment so I spoke to my GP who helpfully downloaded a factsheet and handed it to me! The only other thing that makes a difference to my RLS is drinking plenty of water. My RLS is always worse if i'm dehydrated. Better to wake up for a P than suffer RLS for hours.

  • I recently helped my dad change from pramiraxil, because he was agamentating. He is now on gabapentin after one month his sleeping pattern is just coming to 6 hours a night.

  • i don't know your age. i am 78. last fall i was on the 3mg neupro patch with good results. i began to have intermitant eruptions and it was decided to raise my dose to 6mg gradually. since late fall i have been essentially asymptomatic. i also find that any daytime rumblings are absent allowing me to nap. my doctor told me that neupro has the lowest percentage of augmentation. without expounding, this is my experience.

  • 6mg Patch is way to high, its double of the recommended dose. Yes, neupro patch has the lowest % of augmentation, but you had to increase your patch from 3mg to 6mg so it had obviously stopped working and you will eventually have augmentation. Even a 1mg patch can cause augmentation. Just depends on the person. Trying to detox from that high dose will be a nightmare.!!

  • I have been taking max. dose of ropinirole for about 5 years.

    The neurologist I saw on the 12/5/16. asked if I would like to try another tablet.

    as I felt ropinirole was not working now.

    I am now on pramipexole 0.088mg just one a night. Only been taking them for 4 nights. A bit up and down at the moment. keep you posted.

  • Hi cumoneileen that's what I've been trying to find ,some one on pramipexole. I was I'm ropinerol too and have just came off it ,started today on pramipexole fingers crossed that it works. I've just had a hip replacement and my legs have been the worst ever.

    7681

  • Hello 7681. well fingers crossed. it's early days yet.(5th dose at bed time tonight) I will try and be patient and stick with it. Suffer so badly with RLS. It rules your life. will keep you posted.

  • Hi 7681. Been on pramipexole 0.088mg. for 9 nights.

    Not been good at all. I actually read the leaflet and it said you can take up to 3 tabs. of 0.088mg a day. My consultant prescribed 1 a day. NOT WORKING!!!!! I will get in touch with my GP and see if I can up the dose. keep you posted. Hope you are having better luck.

  • Hi Cumoneileen

    I have been on pramipexole 0.088mg for six nights only getting a couple of hours sleep,I was waiting to see how I do after two weeks if not aby better I'm going back to my doctor. I've just had a hip replacement so I'm having to contend with that as well,will let you how I get on at the doctor's .

    7681

  • Hello 7681. been on pramipexole for 3 weeks been taking 2 tabs instead of one. (doc. said ok) doing well. Take 1 at 4pm and 1 at 10 pm. For the first 9 days they didn't work just taking recommended 1 tab but so pleased at the moment getting peace in the evening and sleep at night. LONG MAY IT LAST.

  • Hi cumoneileen

    that's great to hear,I've been on the pramipexole for nearly two weeks now it has been a hit and miss. Was at the doctor's this morning to see if she would prescribe Targinact as folk on the forum says it is a good one to take but she won't give them to me as she says they are a painkiller,tried to explain how they are licensed to work for RLS. Said i will have to wait till I see my neurologist which could be months away. I am making am appointment to see another doctor.

    7681

  • I had a knee replacement in February and my RLS has been much worse than before

  • Hi Scottie

    I have just come of ropinerol and started today on pramipexole. Don't know how long it takes for them to work but will let you know how I get on. Sorry I can't be any more helpful.

    7681

  • Thanks, please keep me informed

  • Hi Scottie 99

    I have been on pramipexole for 7 nights for the last two nights I have got between 4-5hrs sleep. It has been spread throughout the night but before that I was only getting two hours of sleep. I'm hoping that the pramipexole is starting to work.

    7681

  • Thanks to everyone one for their replies. They have been very helpful. I can now go to my GP with some detailed information.

  • Hi Scottie99

    Just keeping you updated about my RLS on pramipexole. Last night was my 10th night and I got 8hrs sleep,from 10pm -8.30 am. Although it was spread throughout the night it is the most sleep I've had in a long time. I'm still on 0.088mg. I must say the only reason I woke up was from the pain in my hip after my hip replacement.

    I hope last night was not a one off and this is the start of getting my life back to some kind of normality.

    7681

  • Fingers crossed, its sounding a little hopeful!

    I am soldiering on with Ropinerole. I haven't been to see my GP yet, ( i think i am scared to come off it!)

  • Scottie99

    I must admit when I weaned my self of ropinerol it was terrible,I walked the floor for 18-24hrs even the soles of my feet were sore. But now I'm just hoping that this is the start of some kind of normal life. Keep in touch and let me know how you are doing.

    7681

  • I find pramipexole better than ropinerole, but also take one targinact and sometimes some temazepam. Most of us find a combination of drugs helps and for me taking the pills with a gap between prevents the nausea. The other ways that help are life style eg. less stimulation and exercise later in the day...I take x2 prami.

  • 7681

  • Hi scottie 99. I have also been on ropinirole for 5 years. I am now on pramipexole. The neurologist I saw about 3 weeks ago put me on them with good results so far. I take 2 tablets. 1 around 4pm and 1 at 10pm. good luck.

  • Hi there. I am also having augmentation after taking Pramipexole (dopamine) for many years, Now I'm withdrawing the drug & the detox is so terrible I can almost not stand another 24 hours but I'm staying strong. I live in Albany. WA

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