Effects of Coming off Rotigitone (Neu... - Restless Legs Syn...

Restless Legs Syndrome
14,313 members9,066 posts

Effects of Coming off Rotigitone (Neupro Patches

omtenaj
omtenaj

Can anyone share with me experience of coming off Rotigitone please. I've been on 2mg patches for around 15 years but they had started not to be as effective as they had been. Having read about augmentation on here I didn't want to increase the dose. I started on Gaberpentine just before Christmas and was okay until shortly after reducing to half a patch 1mg when I started to get symptoms with a dose of 900mg Gabapentin. By the time I'd reduced to 1/4 patch and 1200 g Gabapentin I was waking around 3 times a night using exercise and other means to reduce the symptoms so I could sleep. by 1/8 patch this was around 5 times a night with very little sleep in between. I left the same 1/8 piece on for 2 nights after increasing the Gabapentin to 1500 and removed the Rotigitone altogether last night. The result was horrendous the intensity of the symptoms were so severe that I couldn't even do my yoga stretches which usually help due to the effect of this diseas. I was up all night either pacing the floor kicking my legs about or laid on my back vigorously shaking my feet and legs. The strength of the sensations in what felt like my nerve endings were so strong and unbearable. What I don't understand is whether these drastically increased sensations are withdrawn symptoms from Rotigitone or whether my disease is actually so much worse than it used to be. Before the patches Id Augmented on just about every other Dopamine agonist very quickly but last night was something else. Also does this mean the Gaberpentin is unlikely to work for me or if my current situation is due to withdrawal is there still a chance it will work or am I completely doomed with no other possible solution. I would be grateful for any help.

21 Replies
oldestnewest

I would say it’s definitely withdrawal and it will be horrendous because you augmented on DAs before and you’ve been on Neupro patch for so long.

The worst of the symptoms will last for at least 10-14 days after the last dose of the patch,

I needed tramadol and cannabis to get through withdrawal.

It does get better so stay strong.

omtenaj
omtenaj in reply to Joolsg

I had already thought about getting some illegal cannabais and making some chocolate buns after retiring. I used to work as a lawyer and would have lost my practicing certificate had I been caught. Heres hoping I don't need to now. x

Joolsg
Joolsg in reply to omtenaj

Likewise! My adult kids arranged it for me. Needs must....

Hang in there! As Jools says, this is withdrawals, it will get better.

What you're experiencing is not unusual at all and the typical pattern is that withdrawals are at their very worst when you make the final reduction to zero.

What you're experiencing does not mean the gabapentin won't work. It's known to be effective, you cannot say at this time.

In the meantime as Jools also says, if you can get a prescription for a short course of an opiate or use cannabis that might help. A benzodiazepine e.g. Clonazepam might help with sleep.

You're doing the right thing.

Madlegs1
Madlegs1 in reply to Manerva

Or clonidine, or valium-- just for the final week.

Halcyumn, zolpidem or stulnoct are effective sleeping pills for shorterm use. And won't leave you groggy next day.

Hang in..

Manerva
Manerva in reply to Madlegs1

I've given up suggesting Z meds now. I've read these quick acting, short lasting meds can cause sleep disturbances e.g. sleep walking. There's been a couple of members recently describing their very nasty experiences of these.

Zolpidem particularly!

The good 'ol benzos might be longer lasting, but more reliable it seems.

Madlegs1
Madlegs1 in reply to Manerva

Usually only with more than minimal doses. Many of the bad instances are where people have taken a double dose- just to make sure, for sure!🤪

And also combined with alcohol.

Otherwise, I would agree with you completely.

I have used low dose sleeping pills quite often, without ill effect. But never more than once a week (except when I was coming off Fentanyl 😧)

It's good to warn people of their dangers.

Manerva
Manerva in reply to Madlegs1

Sadly, for me, alcohol is a thing of the past. I have gallons of home made wine made from home grown fruit, but can't drink much.

Madlegs1
Madlegs1 in reply to Manerva

Oh!! I can empathise/ sympathise so much with that one!

I loved fine whisky and liquoers (collected through Duty Free at various airports)

And made my own wine- apple, raspberry, elderberry- the best!) All gone🙄😭😩

But life goes on ,and I'm very fortunate to be alive, so I will put up with it. 😎

Cheers.

And I look forward to your contributions here. 👍

omtenaj
omtenaj in reply to Madlegs1

I haven't touched Alcohol for 17 years now Madlegs. It was one of my preferred methods to get to sleep through the twitching, or more accurately, pass out, before I was diagnosed with RLS. The end result was my becoming and staying a member of Alcoholics Anonymous. Maybe it would have happened in any event but that's a chicken and egg situation. All I know is that today I neither need or want to drink alcohol today so I no longer have any loss in this regard. I used to tell myself that I might not be able to sleep but at least I would never wake up with a hangover again and that's a plus as we have enough to contend with.

omtenaj
omtenaj in reply to Manerva

Thank you all so much. The symptoms are so horrendous that it was difficult to explain them to my doctor this morning. It was so bad last night that I was searching the posts on here looking for a solution and read about using opioids. I then remembered that I had some Co-codamol (30/500) from a couple of years ago and took 2 around 4am this morning and actually slept for 5 hours. I'm sure you all know how wonderful that was after having no sleep for a good number of days. My GP has given me a prescription for some more this morning. I've taken sleeping pills in the past and my legs just jump through the doziness. I was thinking of taking the Co-codamol with the Gabapentin at night but then I won't know when the withdrawals stop so I think it might be best to take the Co-codamol when the withdrawal symptoms start to kick in as they did work pretty quick last night.. Thank you for your support and for giving me hope. I will keep posting and replying on this forum as all your posts have been so helpful to me. Although there are somme common threads for the treatment of this disease it also seems there is no fixed treatment as everyone has different medication needs and this is what makes all your posts about what has worked for you so useful as they give hope and without hope I for one would lose the will to live.

Joolsg
Joolsg in reply to omtenaj

Sleep is precious- especially when going through DA withdrawal. Doctors have no idea how traumatic it can be.

Co codamol will definitely help the withdrawal ( opioids are very useful at this time).

I hope you manage to get more sleep.

Stick with it and there is light at the end of the tunnel.

omtenaj
omtenaj in reply to Joolsg

Thank you

I too am currently coming off of “the patch”My neurologist had me on such a high dose. As of today, I’m at 6mg and will cut a patch tonight to 5mg. I have not experiences any withdrawal symptoms as of yet. I’m waiting and am sure it will happen. However, I think the reason that I’m not having these symptoms is because I take a tramadol in the evening. I agree with some of the others that opioids my help you. Good luck!

omtenaj
omtenaj in reply to Merny5

And good luck to you too Merny as you have a much larger dose than myself to withdraw from. I took 2 Co-codamol at 4am this morning and slept for a wonderful 5 hours. Heres hoping it will work tonight too. x

omtenaj
omtenaj in reply to Merny5

How yo doing with your rotigitone detox Merry X

Merny5
Merny5 in reply to omtenaj

Hi Omtenaj, I am fairly new to this site and I am seeing your posts for the first time. I’m so sorry for not responding. Thank you for asking. I am not doing that great. I’m waiting on an appointment for an iron infusion and hoping that will work. My ferritin was 37.9, kind of low from what I’m reading here. I’m dealing with some depression which I think might be related to withdrawing. How are you doing?

Hello omtenaj - I just came across this thread as I am thinking of coming off the patch soon. How did it all go for you in the end? Did you manage to come off the patch?

omtenaj
omtenaj in reply to YodaDog

Hi there. Yes I am successful in coming off the patches. I was prescribed Gabapentin for my eyes and restless legs. I am able to go up to 2400 mg a day for my eyes whereas it seems from this forum people are taking much less for restless legs. I wasn’t given guidance about how to reduce the patch and increase Gabapentin so I followed the guidance about increasing Gabapentin weekly for my eyes and starting cutting the 2mg patch time a quarter at a time as I did so. I suffered horrendous withdrawal on that regime but was ok as soon as I started taking an opioid as a supplement. I have since learned that I came off the patches far to quickly over around 6-8 weeks. I have always taken the Gabapentin an hour before bed and slept well all night till I got down to a quarter patch and it got worse as I reduced to 1/8 patch and that was when I started taking 2 Co-Codamol when the twitches started and that got me back to sleep. When I read that paracetamol is ineffective for RLS I asked my GP for Codine and have 30mg codine phosphate which I was told is entry level codine. When I was taking 1200mg Gabapentin I had to take 2 30mg tablets to get back to sleep. When I went up to 1500 I started to get back to sleep with 1 30mg tablet but still need to take another some nights. Not perfect sleep like I had on 2mg rotigitone for over 12 years but once they stopped working new it was time to say goodby. I don’t regret coming off the patches and am happy if I can get back to sleep within half an hour on 1 tablet. I do exercises to stretch the backs of my legs till the codine kicks in and repeat if I wake up again which is not very often at the moment. Part of me is still hoping a time will come when I don’t wake needing codine as it happened 1 night last week. My eyes are improving with Gabapentin so I have to try 1800 mg in another month to see whether there can be any further improvement with them. The other part worries that the codine phosphate might become ineffective and I have to try another possibly stronger opioid. We can only hope. What is lovely is being able to cover myself with cream and oil again and looking forward to using fake tan all over in the summer and not finding the clear backing strips from the patches in the weirdest of places. Good look with your detox and slowly does it. I think we all know now that Dopamine agonist detox is inevitable at some point and best to get it over with as soon as our regular dose stops working. X

YodaDog
YodaDog in reply to omtenaj

Thanks for the advice

Merny5
Merny5 in reply to omtenaj

I’m so happy you are seeing signs of improvement

You may also like...