Trying to get off Neupro

Hi I have been on the Neupro patch 2mg but think I was suffering augmentation as my whole body was often affected. I wrote a post a few weeks ago and Madlegs 1 and someone else (I've forgotten who) both wrote helpful replies and both emphasised that I should definitely not go any higher. My doc. Is a nice chap but completely clueless about RLS (as are so many!) and he actually asked me to find out what was suggested on this site and come back and tell him! I went back and told him about Madleg's suggestion to go on to Gaberpentin. I've done that and have cut down the patch to 1mg. I started with 300mg but this knocked me out cold. Of course Madlegs didn't know that I'm 75yrs old and slim. Anyway I have now gradually worked up to 350mg to 400mg but I either feel completely doped the next day or I'm up all night with RLS, in fact, I now feel terrible most of the time and with several other health probs life is not much fun. Can anyone help?

40 Replies

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  • An opiate might be a better option something like Tramadol should be a lot less sedating than Gabapentin or the likes.

    I have augmented on the 2mg Neupro patch recently and have stopped it. I am using cannabis instead and after a few bad days at the start things have started levelling off thank God.

  • I'm trying cbd oil for tremors. Not working!

  • Are you sure you have a good quality one - not made from industrial hemp? Mind you I didn't find it very effective either.

    Have you tinkered with the dose and taken it correctly as in let it sit under your tongue for a couple of minutes ?

  • I agree with Raffs that Tramadol could be helpful. I actually take a slow release type called Tramulief and have found it to be helpful.

  • Thank you both for your replies. I did actually mention to the doctor that some people found tramadol helpful, but have a feeling, by the look on his face, that he would be reluctant to prescribe it. Also I'm going on holiday on Friday week so it might be difficult to introduce it just now, even if he would agree. What is frightening me about Gaberpentin is the rate at which I'm having to increase the dose. I had to go from 350 - 400 mg to 500mg last night to get any relief. Do you know whether there will be a point when the dose needed will level off then perhaps I might feel a bit more stable? I will definitely mention the Tramadol with the doc as well.

  • Without wanting to worry you I take 2700mg. The first 900 in the morning is very helpful. To complicate matters I suffer with Small Fibre Neuropathy as well so I think my pain is in part attributable to that. Have a nice holiday!

  • Thanks for replying Martino. Looks like I've got a way to go then!! When you started to take the Gaberpentin did you find you had to increase the dose rapidly and then eventually level off at your 2700mg?

  • I seemed to race through the dose of Gabapentin until max then I stopped due to lack of efficacy.

    Drs are very VERY weary about people looking for drugs such as Tramadol, best advice on that front is to collate some info on how Tramadol is used and indeed studied in RLS treatment.

    To start you rolling on the info - Dr. Mark Buchfuhrer from Stanford Sleep Medicine Centre (2017) mentions Tramadol here:

  • Thanks very much Raffs for forwarding the video. He actually says that augmentation can occur with Tramadol but I suppose this would happen less often than with the Dopamine drugs

  • I started in early 2016. I was first on 900mg then went to1800mg and then 2700mg. 3600 has been discussed but not pursued-3600 is the max for RLS

  • So it looks like you haven't levelled off if 3600 has been discussed! Wonder if this is everyone's experience, that they have to continually raise the dose then eventually there's nowhere left to go?

  • Exactly, DineS. With traditional drugs, you have to raise the dosages and over time you have to change drugs, the cycle begins again, and then you are left with nowhere to go. I am 64 and have reached that point. I have said this before but doctors (medical profession) are clueless and can only prescribe synthetic drugs that will work for awhile but will eventually make everything worse. I am on Lyrica and CBD. Neither one of these is addictive and I am very hopeful for long term symptom management. Blessings!

  • Hi Lilly53 How long have you been taking CBD? How do you feel it helps you?

  • I have been using CBD for a couple of months now. I'm still learning what concentration and dosage works best for me. Not all CBD is equal. From my research it needs to come from the aerial parts of the plant for best benefit. And I need at least 15 mg of actual CBD to see any effect. The first time I had it it relieved my symptoms in 15 minutes. I usually take it in the middle of the night when I am jolted awake with full body awfulness . Just a little drop taken orally (again know how much actual CBD you are getting) will allow me to go back to bed in less than a half hour. I'm very hopeful nowadays.

  • Hi lolly,

    I'm sorry if I sound stupid....but what is CBS and where can I get it (I live in the U.K.)!

    I am currently taking ropinerole which I have augumented from in the past and am beginning to again (but nothing else seems to work for me). I used lyrics I. Order to come off ropinerole a few years ago and it worked for a good while but then stopped working. I wanna give it another go as like I said I am now augumenting with ropinerole....but don't feel confident that it will give me enough relief.

    I know a lot of people use a number of combined drugs but I just don't know where to start with mixing drugs....so if CBS works with lyric for you, I'd like to give it a go.

    Thanks, Katie

  • Sorry....I meant CBD!!! 😳

  • Hi Katie

    You don't sound stupid and I am sorry you are experiencing augmentation. I live in the U.S. and some of the drugs that have been discussed (like Reponole) I am unfamiliar with. But it sounds like Repinole is a dopamine that will cause augmentation and that you will have to wean off of.

    CBD stands for Cannabadoid. It comes from the hemp plant as does marijuana but the property that causes the "high" (the THC) is taken out and so it is therefore not psychogenic at all. It is legal here. If you research it in your browser you will find a lot of good information on it. It is beginning to be used for lots of medical ailments and is a natural pain killer. I am trying to not take as much ibuprophen and Tylenol 3 now as they cause stomach and liver damage over time. CBD is not habit forming and there are very few side effects. I take a concentrated oil called CBD Plus. It comes in a tube that dispenses 15-30 mg of CBD in one dose ( it's just a drop and you take it orally). I've been amazed at how it relieves my whole body RLS that jolts me awake in the middle of each night and I usually get relief in 20-30 minutes. I cannot guarantee your success with it but it is certainly worth trying. God bless you. Hope this helps! 🙂

  • Thank you For your quick and detailed reply.

    I will research it and see if I can get it here in the uk. I have tried cannabis I. The past and found it very effective for my RLS, but the "high" kept me awake at night with loads of random thoughts! So CBD sounds to me like it could be the solution.

    Thanks again....I'll see what I can find.

    Katie x

  • I don't think I will increase as the benefit does not increase in proportion to the amount of medication that you take. On smaller doses it does increase. 600 from 300 would give twice the benefit but apparently 1800 from 1200 would not give a 50% increase. The proportionate decrease in effectiveness increases as the dose goes up. An increase from 1800 to 2700 for me may have given, say, a 33% increase. Whilst this is the case that effectiveness increase was worth it but to go to 3600 I was unsure about. I know this looks odd but this is how it was explained to me by my GP

  • Do you believe that the dose you are now on is working for you or did you find that you had to rapidly increase the dose and now you are back to square one with all the problems of trying to get off the drug in front of you?

  • If you were augmenting on Neupro you need to come down slowly and expect a bad time. If you are starting Gabapentin you need to ramp up slowly, normally 3/day for a week, then 6, then 9 or in your case more slowly. It is a turbulent time changing over but will be worth it if you get a long period without RLS and can cope with side effects. Good luck!

  • Thanks John. It seems that my RLS is dictating how quickly I ramp up!! I decided to come off Neupro as I read about Dr Buchfurher's research and how he helps his patients in California by taking them off dopamine drugs altogether. I've had to reduce the Neupro by 1mg as the patches can't be halved. Hope it will all be worth it eventually!!!

  • The patches can be halved - recommended by my specialised

  • Oh! My doc.said that because they were 'reservoir' (think he meant that the medication wasn't distributed evenly) it wasn't possible to halve them, so don't know what's right now! Have you halved yours successfully?

  • Yes. I just cut them in half and stuck them on. They don’t stick so well, so I sometimes had to cover them with sticky tape. I am now on the 2 mg dose, so don’t do it any more.

    I trust my doctor, who specializes in RLS.

  • Thanks. Wish I could get to see him!!

  • He is a she and is a lovely English doctor, works no in France, where I live.

  • What did your doctor prescribe while you were cutting down on the Neupro?

  • I haven’t cut down on the patch but have had to do so on the other drugs in that family because of nausea. I did it with opiates - Tramadol and Codeine - not pleasant but possible.

  • Oh! So these drugs might be distributed differently on the patch from Neupro, but might try it

  • The other drugs - Ropinirole and Sifrol come in pill form but I couldn’t manage them at all With the Sifrol I felt sick all the time and with the Ropinirole I suffered from fainting, nausea and eventually augmentation. The patch is not absorbed in the same way so the side effects are not so bad (for me). As you know, everyone has different experiences with this nasty condition, so I hope you find what works for you. At the moment, I put on the 2mg patch at about 6pm and take a 50 gramme Tramadol at the same time. If the RLS breaks through during the night, I take another Tramadol. I’ve been on this regime for about 18 months but it probably won’t work forever.

    Good luck. You have my sympathy.

  • I thought I managed to halve a patch when coming down. I remember overlapping on the way up, fitted new patch at 10.00pm and didn’t take old one off till morning! A bit unconventional but when you are desperate. Hope you get off DAs as painlessly as possible.

    John

  • Thanks John I'm worried as I'm going abroad for a week on 20th and , with the rate I'm having to add to the Zaberpentin, Im really going to need something else to help me.'Am going to the doc tomorrow and will ask him for a prescription for Tramadol

  • Tram ado would be ideal to get you through the change over. I used it to come of DAs and stayed on it over 3 years. It has just stopped working and I have added Gabapentin, even after 3 days I am doing better (even though I am up again now!). Hope GP gives you some Tramadol.

  • Good question! Yes in that I think it does work but I am not without pain but I do have some memory impairment. I am 69 though so don't know how it would have been if I was younger. I think it works for the neuropathic pain. I also think that my 2mg Neupro plus the Tramulief keeps the RLS under control. My neurologist has hinted that she wants to get me off the Tramulief because of the concerns about opioids but this worries me. A while ago I stopped taking it. First day ok but the second evening my legs were as bad as they have been. I gave in at 1.00am and within 30mins I was ok. The bottom line is that I am relatively ok at the moment! Relatively is the word!

    Martin

  • Glad you are relatively OK Martin. Hope it continues for you.

    Diane

  • Hi Disnes,

    You've received some great advice from everyone above. Just to let you know I was on gabapentin ( 900mg) and it didn't help me at all but gave me dizziness, double vision and severe diarrhoea.

    I'm now on pregabalin, which is a similar family of drugs, and the side effects are much better. No dizziness, double vision or drowsiness. I take 125mg a day along with oxycontin and they are helping me get relief from RLS and sleep. Fingers crossed they continue to work. It's more expensive than gabapentin but my GP happily prescribed it when I suggested it to her after reading about it on this site.

  • Thanks Joolsg. I will have to think about all the advice Ive been given (although am finding thinking and researching very difficult) Just wish the docs knew more about our condition and we could just relie on their advice! I will have to stay on Gaberpentin I think until I come back from my holiday on 27th of this month. Just hope the pain relief will last until then!

  • I have taken Mirapexin and came off it,Ropinarole and I came off it and then Gabapentin. I now have a 4mg Neupro patch plus I take 30mg codeine at 5.00pm followed by 45mg at 10.00pm. I still can’t sit down and rest through the day or evenings plus I rarely get a good night’s sleep . I have been worse though.

  • Sounds like you are augmenting on the 4mg patch. :(

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