Augmentation

I have been on the Neupro patch for several years and felt I was augmenting. My doctor doesn’t have any knowledge about restless legs but is willing to be guided by me! After reading some of Dr Buchfuhrer’s opinions ie he takes his patients off DA’s completely and sometimes uses Gaberpentin plus an opiate, I asked him for these drugs. I have gradually removed half a mg of the patches taking 600mg of Gaba but am now finding it difficult to get off the other half (I was using 2mg). The doc advised that it was better not to increase the Gaba any more and to go on to the opiate when needed. I’m worried as the Tramadol makes me feel drugged up and I’ve still got the other 1mg of Neupro to remove. Does anyone know whether, if I finally get off the Neupro completely, I might start to get a reduction in the RLS symptoms as this is what I thought Dr Buchfuhrer was saying

19 Replies

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  • Only the opiates will completely remove the withdrawal symptoms. Stick with them as far as possible at as low a dose as possible- are you taking the extended release version (ER).

    The side effects will lessen as time goes on.

    I'm not familiar personally with tge Neupro patch- so will see if someone else can help you there.

    For rls you can go up to 900gm pd of Gabapentin. Again , it takes a while to get their full effect.

    Good luck.

  • Thanks Madlegs1 The opiates are Tramadol 50mg modified-release (don’t know if this is the same as ER). One of my main questions was whether (after I’m totally off the DAs, I can expect the RLS to revert to how it was before going on to the DAs years ago, (which would be great). I thought that Dr Buchfuhrer was perhaps meaning that would happen.

    Another question is would it be better to come off the DAs totally now while the Tramadol is having a big effect, or continue trying to do it gradually and perhaps having to raise Tramadol a lot more to cope?

    Sorry if this is all a bit vague.

  • You are fortunate to have a doctor to work with you and well done for all the research you have done already.

    I am currently using a system where I alternate every two months or so between neupro and another drug so I can speak with some assurance about coming off neupro. I start to augment after about 6 weeks on neupro but it works very well - the best of anything - for the first few weeks which makes the system worthwhile. I reduce neupro by cutting the patches in two. I go from a two mg patches to one and a half then to one and then to a half. Then I cut the half into two and am on a quarter before finally stopping altogether (it is quite difficult to get the quarter size off the plastic backing). I spend 4 or 5 days on each stage.

    I find that my symptoms start to become more exaggerated when I reduce to 1 mg and continue to exacerbate as I reduce. They remain exaggerated for nearly a week after I eliminate the neupro altogether. Obviously I am only on the neupro for a short while which means that my symptoms upon withdrawal are much less pronounced than they would be if I was on it long term as you have been. However 2mg is not a very large dose which is in your favour.

    After about a week my symptoms settle down a lot. I fear that because you have been on the drug much longer, yours will take longer to settle down - maybe up to a month. However, I would be reasonably confident that they will eventually settle to more or less what they were before you started neupro - your 'baseline' figure if you like.

    While I am withdrawing from neupro I take kratom and supplement it with the occasional oxycontin tablet - I don't like taking too many of these. Kratom is very effective against the symptoms and is less severe than an opiate/opioid but is not for everyone as it is unfortunately illegal in UK. I order mine from Holland. I doubt if you will find anything less than an opioid or kratom will work well with the symptoms you will experience as you reduce your dose of neupro (as you will have seen from the answers to Dr. Buchfuhrer's letters). In particular I doubt if gabapentin will be much use.

    I withdrew from pramipexole (another dopamine agonist) a couple of years ago after being on that drug for more than 10 years. I was highly augmented and on a high dose - 1.5mg. The symptoms I experienced then were far more extreme than those I get coming off neupro now. I found that pregabalin was useless in dealing with those symptoms and I suspect the same would be true of gabapentin. Therefore I doubt that the gabapentin you are on will help enormously with the withdrawal from neupro. I would not be inclined to stop them now though as it will be even more withdrawals for your system to cope with.

    Gabapentin may ultimately be very effective against your symptoms - just not against the exaggerated symptoms you experience upon withdrawal from neupro. Once you have washed the neupro out of your system (possibly not until about a month after taking the last one), you can start to eliminate any opioids/kratom that you took to get you through that period and then start to experiment with what you actually require to treat the legs.

    One final thing: getting your iron levels up is supposed to be helpful at the withdrawal stage so I would be inclined to get a serum ferritin test (you need to get the actual figure not just a diagnosis of 'normal') and if you are anything much below 100 start an iron supplement.

  • Thanks so much involuntarydancer for your well thought out and helpful answer. I’m really surprised that you’ve been successful in halving and quartering the Neupro. My doctor was adamant that this wasn’t possible. I’m going to try and digest all you’ve told me and maybe phone my doctor and tell him I’m going to need Tramadol for quite a while (He was rather nervous about prescribing them and wants me to only take them when it’s absolutely necessary)

    It’s great to have someone like you with so much experience

  • Thanks, DisneS, I fervently wish I had less cause to be experienced!

    The truth is I learned nearly all I know from this forum, the answers to Dr. Buchfuhrer's letters and the forum to the US site rls.org. By the time I got the book (Clinical Management of RLS), I think I had already absorbed most of the contents from these sites. Ifind almost all of the information on here is good from a medical point of view and ALL of it is well intentioned.

    Funny about cutting the patches in half, I am almost certain it was my GP who told me I could do it (although in fairness he told me to cut oxycontin tablets in half and that is a definite no-no so he's well capable of getting it wrong). I did wonder at the time because there may be an uneven distribution of medicine across the patch. You might want to double check that but I haven't come to any harm with that system. I have a half notion someone else on here does/did it.

    Your doctor is of course correct to be circumspect about tramadol - it being an opioid and consequently fairly prone to dependency and addiction problems. However, you are asking for it to assist in reducing medication so not for the usual reasons at all (and in a situation where it is well established that nothing else will work) and specifically for a limited time frame.

    I didn't want to overburden you with information (my posts tend to be extra long at the best) but to be strictly honest if you take the tramadol for too long you may find it bothersome to discontinue also. I had some problems discontinuing oxycontin (I think it might be worse though than tramadol). It wasn't even in the same ball park though as coming off the dopamine agonist and was infinitely do-able.

    Best of luck for the next few weeks. Keep posting.

  • Hello Disney,

    I am being treated for my RLS by a sleep specialist in a French hospital. She advised me to cut the patches in half. They don't stick so well, but can be consolidated by surgical tape etc.

    Good luck

  • Thank you macewan13

  • Sorry I got your name wrong - predictive text strikes again.

    Merry Christmas

  • Hello involuntarydancer I’ve just managed to reduce my Neupro to 1/2 by cutting it (as you suggested). I think I will try to go back onto it after about two months. Have been wondering how to do this. Do you gradually cut down on your other drug then gradually introduce the Neupro again? Also I was wondering which other drugs you find effective, or do you simply alternate between one other drug and Rotigatine? Am seeing the Doc tomorrow so will tell him about your suggestions.

    Thanks very much for all your very helpful information

    Diane

  • Hi Diane,

    Well done for reducing the neupro. I think to get maximum benefit from neupro in future you would need to come off it completely for a few weeks.

    I actually can’t remember whether I go straight to the 2mg patch when starting neupro. I think I have previously gone up from 1 mg to two. This time I might go directly to 2mg patch. Typically the patches start working immediately so I don’t need another drug once I am on them but I have to spend a few days titrating down off the kratom so that I don’t give my system too much of a shock by stopping it cold turkey

    When I am coming off it I cut the patch in half and then a quarter as you have done. As I said, I use Kratom to cover symptoms as they emerge (I would be surprised if your consultant will entertain the thought of kratom though).

    I am still struggling to find a really effective alternative during my non neupro phase. I was using Kratom which has a number of defects as a treatment:

    First, it is illegal which by itself I will not let put me off because it can be very effective against Rls and is definitely less addictive than opiates for me but of course there are worries about quality control;

    Second, for me it has alerting qualities so that while it mostly works well against the legs, I still lie awake sometimes all night. This is not unpleasant at the time but the following day is a write off;

    Thirdly, occasionally it would be just ineffective against the legs.

    Your could possibly use tramadol in place of Kratom but I would suspect it would be more difficult to come on and off than Kratom.

    I am now experimenting with pregabalin (lyrica) to see if I can gain a more reliable alternative regime with that but so far I am having problems with awful restlessness in my body (similar to but not quite the same as Rls) which I think is caused by the Lyrica.

    I am hoping it will settle down if I persist for another week or so but not sure how I am going to manage next week when my work ramps up again.

    Also lyrica requires a slow titration up and down which means it is not ideal for alternating

    For me rotating with another dopamine agonist (such as rotigatine) wouldn’t work and I don’t think it would work for anyone who has augmented on a d/a. You need to give your receptors a break from the dopamine agonist.

    Even with taking the break I worry that the length of time I get on neupro before I start augmenting is diminishing - at present I get about 6 weeks but will be interested to see how it goes next time. I can’t wait to be back on it as nothing else works nearly so well but it’s too soon yet.

    Best of luck with your appointment.

  • I recently stopped the Neupro patch due to augmentation - went from 2mg to stopping without tapering off and found it easy with cannabis. I had also been using Tramadol 50mg twice a day and stopped it too so now only taking Targinact and cannabis occasionally and have reasonably good control over the RLS.

  • How much targinact are you on, Raffs? Does it interfere with your sleep?

  • I'm taking 40/20 preparation. I can't honestly say if it effects my sleep or not as I wouldn't know a half decent sleep routine if it came up and treated me like a Conservative minister, (sorry - can't help myself :) ). Some nights I sleep well (6 hours with less than 3 interruptions), some not at all and a wide variety in between.

    What I do know is that I can be quite tired in the evenings before it and after taking it I get a new lease of life. I forgot to take it the other night as I was exhausted and not thinking straight; I ended up forced out of bed at 4 with my body break dancing on me - so at least I know it works :)

  • Thanks - absolutely LOVE the conservative minister quip.

  • Thanks rafts. I think I’ll stick with the Tramadol. Think cannabis is illegal in the (UK). I’ve tried CBD oil but it doesn’t seem to do a lot,

  • Yeah cannabis is illegal, but strange how you can have a crime without a victim! Mind you its legal status in no way impairs its efficacy! I used to worry about its legality but figure I'd rather be fit to live :) .

    Its such a twisted world where alcohol that kills millions is legal and cannabis that has no recorded deaths in its thousands of years use is illegal. Mind you illegal or not Sativex by GW pharmaceuticals is from cannabis legally grown in the UK, Porton Down I think.

    Yeah I found the CBD oil pretty ineffective, but then I was in a very bad way at that time. It can be quite expensive too.

  • So wonder why they are allowed to grow it legally?

  • Because multi millions of pounds can be made adn back handers given to politicians.

    Their product costs £100+ and there are videos online to make it for $5, the system is corrupt!

  • Yeah like most systems in this old world!!

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