Hi, I have been on 3mg 2x day ropinerole for RLS the past two years and recently was put on 300 mg gabapentin 2x day for leg nerve pain after back surgery a month ago. I really want to get off both meds to see how my RLS is and the past 3 days I developed hives and itch. My legs, arms, and glutes (backside). I think it is related to the gabapentin?? Any ideas on how to wean my self off the meds without developing and withdrawal systems.
Thank you!
Gabapentin was horrible to withdraw from. I can't stop the ropinerole as my restless legs start after missing one dose.
To get off that high dose of Ropinerole will mean weaning down very slowly, and taking a strong pain med like Tramadol which will help with the withdrawals. There is no getting away from having withdrawals when weaning off a dopamine med. I would just do one med at the time for now. the high dose of the Ropinerole is more important than the Gabapentin.
What has changed in or just before the past 3 days that may be related to the hives and itch you have developed? Do you think it was the gabapentin? If so, talk to your relevant doc.
And I agree with Elisse re the ropinirole.
Im also on 6mg of Ropinerol but until there's something that will keep my RLS mostly under control I just dare not go without it. My neurologist is monitoring me. Gabapentin was my GPs idea and every time I went back and said it didn't work he just upper the dose. My RLS is not confined to legs its my whole body. I still have bad attacks but not two or three a day like I was before. It's not an ideal situation by any means but I have other health problems as well, I'm not very mobile and pacing up and down with my arms whirling round and my head nodding away is not the best way to spend the night.
Hi Elles5
You are in full blown augmentation and it won't stop until you get off the ropinirole. You need to read the posts on augmentation, have a look at the video and see your doctor asap. You'll need a strong painkiller like tramadol/codeine/oxycontin to take while reducing ropinirole slowly.
Gabapentin won't have any effect while you're still on ropinirole.
Lots of people on here have stopped ropinirole ( it's really hard but we've survived to tell the tale) and there are other meds which will help.
I am already on Tramadol and Paracetamol. Won't go back on Gabapentin ever. My options are very limited.
Spoke to my GP about augmentation but as I have gone from three episodes a day to maybe two a week he is not concerned at this stage. Getting someone who actually knows what it's like is rare. Im having a op on my foot in a couple of weeks and I have to be non weight bearing for two weeks at least. I can't come off anything until I can walk again. Don't know how I'm going to cope.
I got off ropinirole last August after I had exactly what you are going through- RLS in my arms, torso and face all the time.
I am now on oxycontin and pregabalin. I still get RLS but only in my legs.
Tramadol and paracetamol work on their own for a lot of people but you won't see any improvement until you get off ropinirole. 6mg is way too high.
I understand your fear- I used to live in horror of ropinirole being unavailable.
I understand you don't want to do anything until after your op but I suggest you look at the video link Kaarina has posted.
I'm not sure if you are in UK but our GPs are not accessible, you never see the same one twice and you are only allowed to talk about one illness in a consultation. I can't do that because if I come off Ropinerol it will have an effect on my other conditions. My body is used to Tramadol so I don't know if it would be any help with coming off Ropinerol. It's a big problem I know but without medial support I wouldn't know what to do to keep safe.
Forgot to say the Tramadol and Paracetamol are for arthritis and degenerative disc disease.
Yes I'm in UK. I understand the time constraints but you have to demand help. Print off all you can find on here about augmentation as your GP clearly doesn't know what he's talking about. Maybe if you show him the details, he will listen to you. You will have to take control and become the expert in your condition and tell the GP that things will only get worse for you if he doesn't help you through withdrawal and to find a new medication. Targinact is licensed by NICE in the UK for RLS and that could be an option once you're off ropinirole.
Maybe type a letter setting out your concerns and all the info on Augmentation as that may persuade your GP to give you more time.
You could also ask for a referral to a sleep clinic ( they know more about RLS than most neurologists)
There is absolutely no way we can do that. Our GPs will not write letters will not copy letters from your files, do not respond to ESA requests and will not look at anything printed from internet. or newspaper. We are a rural area and there is no alternative surgery. They say they will see patients as soon as they can, or they will do all the extras but be prepared for there to be no appointments as GPs will be busy with paperwork. I came off Gabapentin with the help of our pharmacist over about ten months. I daren't do that with Ropinerol.
I also have REM Behaviour disorder. Our sleep clinic just observers then sends findings to GP who then refers to Neurologist. GP would just tell my to wait till I see the Neurology Professor again
My goodness. I knew the US system was bad - in terms of difficult to access and most of all expensive (I lived in OK for 7 months). But this seems simply counterproductive.
I don't know how we can help, but ask if you have questions. And moan and complain or simply share what is on your mind. We'll be here to help - if we can - and to listen.
Take care Elle!
I am really sorry that you are receiving such appalling treatment from your GP surgery. That must make things so difficult for you.
The only thing I can suggest is that you slowly reduce the ropinirole yourself and up the tramadol dose slightly to deal with the withdrawal.
You have clearly been to a sleep clinic in the past and a neurologist so maybe you could call their receptionist/admin secretary and explain you are going through augmentation and ask them to write to your GP to add codeine/extra tramadol/oxycontin to help you through the withdrawal.
As you have a supply of tramadol, you could do the withdrawal on your own by reducing ropinirole 1mg every 2 weeks until you are at 2mg and then monitor the RLS. If you still have all over body RLS then you could reduce further by .5mg a week. Take more tramadol as the withdrawal kicks in. I was advised by Dr Buchfuhrer at the S. California rls centre to take 50mg of tramadol every 4 hours during the worst of the withdrawal.
If you can get hold of cannabis ( I know it's illegal here in UK) that also helps during withdrawal.
Read posts by bganim and Nick the Turk and you can see that , although difficult, it is possible to get off ropinirole.
I wish you all the best
Is 1mg every 2 weeks slow enough? I am having an ankle joint fusion in 2 weeks and I'm not going to be walking for a while. Dreading the RLS kicking in badly during that time. I am quite prepared to give it a try though once I can resume pacing up and down. I know I shouldn't be on that dose but when it's prescribed by a Professor of Neurology who has been a godsend to me in the past I don't want to question his judgement.
Definitely wait until you are fully recovered from your op. You will need to be able to pace about a lot. I would suggest a slower reduction but as you are on 6 mg it would take 2 months to get down to 2mg. Every reduction in dose causes withdrawal symptoms so you can take it slower, say 1 mg every 3 weeks and see how you cope.
I understand your reluctance to go against your neurologist but if he put you on 6 mg he is not very knowledgeable about RLS. Not many neurologists are! My own MS neurologist admits she doesn't know enough to advise. The previous one was an arrogant hit who prescribed amitriptyline- poison for us RLS peeps.
I learnt from this site that the people on here are more expert than 90% of general neurologists.
Wait til after your op and in the meantime read everything you can.
We will all be here to help you get off ropinirole and find suitable replacements.
Hope the op goes well.
Take care
Jools
I am hoping that the sciatic nerve that was pinched prior to surgery was giving me grief instead if actual RLS. I am going to call my MD tomorrow to get a plan of action to come off the ropinerole and most recent gabapentin that my back surgeon put me on. My RLS wasn't an every night occurance so I am hoping that now my back is good that it is has gone away. Praying to Jesus that I can get off these meds.
I too have very itchy hives and take gabapentin. Does gaba cause hives?
I figured out the it was the Axe brand body wash I was using, the itchiness is gone since I stopped using it. I am still weaning myself off of both slowly.
I bet you're one happy dude!
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