Need Advice about precautions re: Ropinerole and general surgical anesthesia

Hello everyone, I've been out of touch for a while due to an unexpected health problem. I have an 11 cm. ovarian cyst that needs to be removed. I have been concerned about the interaction of my ropinerole and general anesthesia. while my surgeon and hospital pre-op staff have been sympathetic, they admit to knowing nothing about it. I

As some of you know, since January I have been titrating down from 12 mgs of Extended Release Ropinerole to 4 mgs daily. I take only one dose of the 4 mgs at 5:00 daily with 28 mgs. of Iron Bisglycinate and OJ. The hospital has amazingly moved my surgery time up from 2:45 PM to 11:30 AM next Wednesday to accommodate my 5:00 PM dosage requirements. Does anyone know if there are any reactions or contraindications between ropinerole and general anesthesia? Any advice going into surgery?

My surgeon has been sympathetic re: my RLS, especially since it presents as a full body involvement. if I do have an episode. When I tried to explain to the surgeon that I need to take my RLS meds at close to 5:00 daily since it is a once a day extended release dosage or I will have an episode that evening, she laughed and said you won't have to worry about having an episode while under anesthesia. Does any one know if this is true?

18 Replies

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  • I've found this article on anaesthetic use on Parkinsons' patients and it mentions levodopa ( similar to ropinirole but taken in MUCH higher doses by Parkinsons patients).It mentions which anaesthetic to avoid). Maybe you could print it off and email to your doctor.

    aagbi.org/sites/default/fil...

    You are on a very high dose of ropinirole ( 2mg is now considered the max dose) so that would explain why you are experiencing all over body RLS. It's clearly Augmentation. Perhaps you should print off the relevant info from this site on augmentation so the doctors can read about it. I would also video your all over RLS to show them so they can see you have absolutely no control over it once it kicks in.

    It's clearly not the right time now to consider titrating down further, as the withdrawal would be too awful on top of the stress of the cyst and surgery.

    I wish you all the best in recovering from the surgery and really hope that once fully recovered you get off this awful drug. It's not pleasant to do but once through the withdrawal, you will find other meds that will give you relief.

  • I am down to 2 Mgs of Ropinerole Extended Release now. Going well most days--but now getting RLS sensations in leg and shoulder. Is this withdrawal? How do I handle that?

    I want to be off Ropinerole entirely, but not sure how to do it from here. Can't reduce the 2 mgs to 1 because they don't make iextended Release in anything less than 2 mgs. You mentioned other drugs that are better--such as?

  • The last mg of ropinirole is the hardest as every cell in your body will be screaming for dopamine and every bit of you will suffer RLS. It was the hardest thing I've ever done in my life and I very nearly didn't make it through. My husband stayed up with me all through the night on some of the darkest days.

    You will need strong painkillers like tramadol, codeine or oxycontin to get you through the last 3/4 weeks of withdrawal as it is very difficult for most people. You should also start on gabapentin enacarbil(horizant) or pregabalin as these drugs take 2/3 weeks to become effective and they should reduce the RLS once you're off ropinirole. Most people find 2 drugs are more effective than one at this stage, so you can add in tramadol or codeine or oxycontin, all at low doses.

    Look up Nick the Turk on here- he came off pramiprxole recently.

    Any questions just ask as a lot of us have gone through augmentation and withdrawal over the last year.

    Good luck

    Jools

  • Love you all. Thank you.

  • Maybe ask your doctor for normal ropinirole for the last few weeks as this is available in .5mg or just cut the 1 mg in half. The extended release version causes worse augmentation than the normal version according to Dr Buchfuhrer.

  • Wow, that was helpful. Thank you. I have quite a bit of the regular 1 mg Ropinerole in my cabinet, enough to get me through a few weeks.

    How do you suggest I take it now with the 2 mg extended Released?

    I'm up and about. With only two hours sleep, yawn, Yet at 12:30 pm, i can still feel the RLS weirdness in my left shoulder, arm, and left leg.

    It's so weird, I can't even attempt to describe to someone what the sensation of this feels like. It's not pins & needles, but it's kind of like that, it's not pain, but it is as distracting as pain. It's a condition with that description!

  • I would take 2mg of normal ropinirole for 2 weeks, 1.5 mg for another 2 weeks, 1mg for another 2 weeks and then.5 mg for 2 weeks.

    With each drop in ropinirole the RLS will cause you really bad symptoms and lack of sleep so you really need your GP on your side. Tell GP what you are doing and have the tramadol/ codeine/ oxycontin ready particularly when you stop that last .5mg. You are unlikely to get any sleep for 3/4 days at this stage so make sure you have family/ friends around and if you are working, take time off.

    Start the gabapentin/ pregabalin once you are down to 1.5mg of ropinirole.

    Read everything you can on here about augmentation and withdrawal.

    It's horrible and you'll think you can't make it but you will and once you're off this horrible drug, you'll see a reduction in all over body RLS and you'll start to get some good days and nights.

    Everyone is different so some people find they manage really well on 50mg of tramadol twice a day, others do well on oxycontin 10mg twice a day and others on pregabalin 100mg twice a day.

    I am on oxycontin 10mg twice a day and 175 mg pregabalin in 3 doses in evening/ night.

    There is a really good book called " Clinical Management of Restless Legs Syndrome" by Drs Lee, Buchfuhrer, Allen & Hening. You can get a used copy on Amazon.

    Best of luck,

    Jools

  • Jools?

    That was a great and very detailed reply, thank you.

    I'm very nervous about getting off the 2mg. Extended Release just yet. I just titrated the 4mgs dose two weeks ago, and have been getting these on and off episodes shoulder/leg episodes. Is there a way to transition easily from the 2 mg ER to 2 mgs of regular Ropinerole?

    My doc is on board with whatever you folks on this site suggest.

    I have a supply of Gabapentin and tramadol as they are part of my standard daily scripts. My GP has said though, absolutely no tramadol should ever be taken with another opiod like oxy --meaning Percocet, or with Vicodin--I have that too. So while on the Percocet now, post-surgery, I'm not taking Tramadol but am still taking Gabapentin , iron bisglycinate, and trying to wean off Percocet.

    So when or how do I go off the 2 mg ER Ropinerole? And what time of day do you think best to take the Ropinerole, especially considering how the RLS withdrawal symptoms are coming on more frequently?

    Jools, you are being so very helpful and comforting. At 4 AM I was awake feeling so helpless to know what to do. Then came your always prompt reply. I felt so much better. Thank you!

    Bganim

  • Hi Bganim.

    Just need to remind you that you will go through hell before you feel better. Be prepared. I have given up pramipexole at beginning of April and never looked back! I was on DA medicine for 8 months so I believe it was cleared from my system after about 10 days! I had full body Rls at the beginning. It was a nightmare. Stay strong. You will get to the light at the end of the tunnel. We are all here for you so please don't feel alone.

    Are you still on iron tablets?

    Lots of love

    B.

  • Thank you, what a sweet and supportive reply. Yes, still on the iron BisglycinateIt still works 90 % of the time to stop the RLS if I catch it soon enough. You have given good advice. Thank you.

  • I would start the 2 mg normal ropinirole as soon as possible and just substitute it for the extended release. If you have it in 1mg doses, take 1mg at around 8 pm in the evening and 1mg just before bed. They won't give as much relief as the ER as the effects will wear off quicker.

    Take a percocet during the night if you wake up with RLS. I agree that you should listen to your doctor on not taking another opioid alongside the percocet. The iron bisglycinate won't help much during withdrawal sadly, but it may help once you're through it. What you are describing is augmentation - those weird feelings in your shoulders.

    Take care and stay strong,

    Jools

  • Well done for cutting down so dramatically on the extended release ropinerole.

    Jules' replies are spot on - it's a very good idea to substitute the regular ropinerole and then gradually reduce.

    I agree (again) with Jules that the sensations in your shoulder and arm are part of the augmentation/withdrawal problem. You describe them very neutrally but I imagine they are awful. Unfortunately - as Bkc also advises - they will most likely be with you until about 10 - 14 days after you take the final ropinerole tablet. But after that ... you will be free and you may find that your symptoms revert to a much more manageable level.

    Good luck with your journey and with recovery from the surgery. I applaud your resolution in carrying through your elimination of the ropinerole.

  • See my response to you above. It really belongs here.

  • That reply was for joolsg

  • You were so right!

    As soon as I read your message about using the 1 mg regular ropinirole, I went right to my medicine cabinet and took one. In about 20 minutes I felt such relief that I hadn't felt for the last 24 hours. Took another 1 mg when I got up this morning since I had indescribable feeling coming through my my shoulder, and within minutes it was gone. I slept so Soundly through the night -- first time since surgery a week ago. I finally feel like I'm beginning to heal after a week since surgery. Thank you Joolsg, thank you so much for your wonderful advice.

  • Hi Bganim,

    Have you spoken with the anaesthetist who will be with you during your operation? I am sure you will be able to discuss your reservations/fears with him/her before the operation.

    As Joolsg mentions you are on a very high dose of ropinirole and this has caused augmentation. This is a good link to read: sleepreviewmag.com/2015/02/... in due course.

    I wish you well with your surgery and post op recovery. Do keep in touch. :)

  • I had abdominal surgery with a spinal block anaesthetic and my rls stopped. Some time after the surgery the rls recurred, at my usual dosage time, and I asked for my Ropinerole. There were no ill effects. I don't know about general anaesthetic.

  • One of the culprits when having surgery is the anti-nausea med they add to the anaesthetic, anti-nausea meds can set your RLS off. Ask for Zofran. As far i know the anaesthetic its self shouldnt be a worry.

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