Augmentation

[DisneS]

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

[Madlegs1]

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.

[DisneS in reply to Madlegs1]

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.

[involuntarydancer]

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.

[DisneS in reply to involuntarydancer]

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

[involuntarydancer in reply to DisneS]

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.

[macewan13 in reply to involuntarydancer]

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

[DisneS in reply to macewan13]

Thank you macewan13

[macewan13 in reply to DisneS]

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

Merry Christmas

[DisneS in reply to involuntarydancer]

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

[involuntarydancer in reply to DisneS]

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.

[616161 in reply to involuntarydancer]

Hi am on 4mg nepro patch it helps with the upper body movement but doesn't help my legs. Waiting to go back to the neurologist I want to cut my legs off there are so bad.

[involuntarydancer in reply to 616161]

4mg seems high. I think the current recommended upper limit is 3mg. It is likely you are experiencing augmentation which is causing your awful symptoms.

You should do some research on this before returning to your consultant as often they don’t know as much as they should about Rls and can inadvertently cause additional problems. It is worth knowing what the current thinking is amongst Rls experts and fortunately that is readily accessible. Dr Buchfuhrer posts pages of advice on his website rlshelp.org in the form of answers to patients’ questions. The Johns Hopkins Medical website has an RLS section which has many short webinars and other information from their world leading experts. The US organization Rls.org has loads of information also. You will also pick up a lot of really well informed information on this forum.

If you are experiencing augmentation then the only option is to come off the neupro - cutting down gradually by removing maybe one quarter of a patch every week or 10 days. Even with a gradual reduction it will be very unpleasant at the end and you will most likely get little to no sleep for a week or two unless you can get a prescription for opioids which are the only things that will help in this acute phase. Once you have eliminated the neupro your symptoms should revert to pre-augmentation levels and you can look for an alternative treatment.

In the meantime it is worth getting your iron levels checked (serum ferritin) and aim to get the figure over 100. This can help with symptoms.

[DisneS in reply to involuntarydancer]

Hello again Involuntary dancer, You gave me some useful tips regarding coming off Neupro and I have now been off the patches for a couple of months. I took Tramadol and kept the dose down to 50mg taken mostly every other day. It worked well for a while along with the 600mg of Gaberpentin which I had been taking for some time but then 2 or 3 weeks ago I started to experience bad side effects and I managed to get off it a couple of weeks ago. Since then I have continued on with the600mg of Gaberpentin. My doc advised me to keep it at that level or, otherwise I would probably get side effects on a higher dose. Unfortunately it hasn’t coped with the RLS symptoms and and am now suffering badly from lack of sleep and looking forward to going back onto the patches. I’m now worried about withdrawal effects of the Gaberpentin, and if they are severe, what should I take. I’m not happy with taking Kratom and wondered what your advice would be. This horrendous disease is such a blight on our lives!!

[involuntarydancer in reply to DisneS]

Hi DisneS,

Well done for getting off neupro. I'm really sorry to hear of your current difficulties. So far as prescription drugs for rls are concerned, the three categories are the dopamine agonists (which I would say it is too early for you to return to - I wouldn't go next or near them for a year at least), the A2D ligands such as gabapentin and pregabalin (lyrica), and opioids such as tramadol.

As you know I am not a doctor and my observations are purely based on my own experience and what I have read - both in medical publications and of the experience of other sufferers. I would say at the outset that I think RLS responds better to a cocktail of drugs, each taken at the lowest possible dose, than to a single drug - both in terms of how well the regime works and in terms of preventing the RLS frombecoming immune to the effects of the drugs in the longer terms. Moreover, there is some evidence that the A2D ligands, which you are now relying on, can be less effective for people who have suffered augmentation on a dopamine agonist.

That said, they can be very effective. I wonder would it be worth your while trying a different form of A2D ligand? Gabapentin is variable in its impact on the individual - some people don't absorb it well in the gut. Pregabalin (often sold as Lyrica) can be more reliable and might work better for you so it might be worth trying it. There is also Horizant although I don't think it is available this side of the pond.

Iron is important for most people (as I most likely mentioned already) so get your serum ferritin checked if you haven't already. Make sure to get the actual figure as RLS sufferers need to be over 100 and the general public can be as low as 20 so if you are told you are 'normal' (this is the invariable diagnosis), this could be very misleading as it could be far too low to impact on your rls. Daily oral iron (many swear by ferrous bisglycinate - aka gentle iron - which can be obtained from some health food stores, holland and barrett or online) can help symptoms a LOT - some people say taking it every second day leads to better absorption.

I have found that getting my symptoms under control has taken a prolonged period of tweaking and trying different things. I am experimenting with the drug dipyridamole following a small study which linked RLS with adenosine. Not everyone wants to try this drug because it is a blood thinner and can have implications for heart conditions and carries a small risk of internal bleeding. I also use Lyrica in a small dose and am now trying LDN (low dose naltrexone). Finally, I have added back in a tiny dose of pramipexole (a dopamine agonist) which I take 5 out of 7 days (as I said already, I do not think you should do this yet - it is two years since I eliminated pramipexole so my receptors had a long break). I do not use an opioid but if I had problems with my symptoms I would not hesitate to do so. As you know, I do use kratom although at present, I am only using it on days when I don't take the pramipexole. It is not advisable to take any opioid type substance within 4 hours of LDN.

I'm not sure if LDN is having any impact. I think that the most effective drug in my regime is the pramipexole - sadly - I wish it wasn't and I still hope the LDN will kick in in due course and I can discontinue pramipexole. I would also love to eliminate pregabalin but it definitely also plays a part in helping because when I go below 75mg my symptoms disimprove. Dipyridamole also helps in that it eliminates the creepy crawley sensations although not so much the urge to move.

More and more people are reporting success with diet. Particularly eliminating dairy, gluten, sugar and meat - so no problems - a lettuce leaf a day is ideal!

It truly is a journey of experimentation with constant tweaking and changing required to stay one step ahead of the beast. I hope you get some relief. Maybe some others will post suggestions. I might be worth starting a new thread for yourself. Good luck

[DisneS in reply to involuntarydancer]

Thanks very much for all that information. My doc is thinking it would be a good plan for me to go back onto the patches by the end of July when I am going on holiday. Actually he’s trying to help but he’s not got the experience of treating RLS.

I was very surprised and dissapointed that from your aquired knowledge you would think it better to wait a year. I wonder if going back on the patches for a week would cause problems, but don’t suppose that’s something you would recommend . It’s such a pity that most medics haven’t got any idea about what do do with us!!

[involuntarydancer in reply to DisneS]

I would be very anxious to think that you were relying too firmly on what I suggest. I was very busy today and didn’t have time to look through your posts in detail but in your original post you say you think you are augmenting on neupro - so you don’t sound 100% sure which suggests it’s possible the augmentation hadn’t gone too far.

If the augmentation wasn’t too extreme maybe it’d be ok to go back on neupro. I think there are some who have done that. Augmentation is less likely at very low doses so maybe if you keep the neupro dose low and use the gabapentin - or lyrica if you decide to try that - to cover breakthrough symptoms.

Also to allow me to enjoy a holiday, I would consider resuming the dopamine agonist temporarily if I were in your shoes as I do think we have to live a little (though I suspect that rls experts such as Dr Buchfuhrer would counsel against it).

To put my views in perspective, I augmented on pramipexole. Within about three months of coming off pramipexole my sleep consultant wanted me to try neupro. Although very reluctant originally, I eventually did and I found that I started to augment on neupro within about 8 weeks of starting it. This happened every time. However it wasn’t too troublesome to discontinue neupro in these circumstances (I discontinued it pretty much as soon as I felt augmentation setting in). So you could try it and see how you get on and if it does work well and good and if it starts to become ineffective quickly or symptoms spread or come on earlier, well then you know to discontinue.

[involuntarydancer in reply to involuntarydancer]

I’m not sure I’m making a lot of sense as I’ve had a long day. When I started neupro I had never actually augmented on it - I augmented on pramipexole, another dopamine agonist. I think that’s why my sleep consultant thought neupro would be ok.

Because neupro worked so well (though only for about 8 weeks) I pursued a regime of alternating it every 8 weeks with Kratom.

I eventually discontinued this regime however as there were drawbacks. My treatment is an on-going experiment! There are many who say that once you have augmented on a dopamine agonist you should never take one again. I am bucking this trend, having reintroduced a tiny dose of pramipexole. Time will tell whether this will prove a long term option. So I am most certainly not in a position to say that you shouldn’t try neupro again.

[DisneS in reply to involuntarydancer]

I really appreciate your taking the trouble to look up my posts when you we’re so busy ID

Actually at the time I wrote them I was thinking that my problem could simply be a worsening of the RLS rather than augmentation but I had developed RLS in my arms and sometimes my whole body (with the patch I didn’t of course have the signal of the symptoms starting earlier) so it was more than likely I was augmenting and in that case it might be a bad idea to re-introduce the DAs except perhaps just for my holiday. Incidentally I would be really interested to know what the drawbacks were with alternating drugs

Please don’t be anxious that I might be relying too much on your suggestions. I know whatever I decide to do it will be my decision and no one else is to blame. I just wish I had a sleep consultant with some knowledge to go and chat with!!

All the best with your treatment

[involuntarydancer in reply to DisneS]

Having a qualified and knowledgeable medical expert to discuss treatments with would be fantastic and not a luxury available to many of us! You could email the indefatigable Dr. Buchfuhrer who responds to all emails usually within 24 hours. He is amazing. His website is rlshelp.org

The alternating system worked reasonably well but I had a few days of misery at each change over. Then 2mg of neupro just didn’t work even after an 8 week break but I did get a return of impulse control issues so I felt I had to discontinue neupro more long term.

Then, while I was on the Kratom, I had difficulty sleeping so although the legs were under control I was exhausted all the time.

In the end I felt I had to get a better system - one that allowed some quality of life.

I am a restless experimenter in my attempts to find peace from my restless legs!

Btw in response to your original issue of discontinuing gabapentin, I would reduce this incrementally and fairly gradually. I believe it is usually relatively easy to discontinue it if you haven’t been on it for too long. It partly depends on the strength of the tablets you have but I wouldn’t reduce by more than 100mg at a time and I’d take a few days to let the body get used to each reduced dose.

I find it very difficult to reduce/discontinue pregabalin - I get dreadful symptoms - so I have followed a regime of reducing by about 10% every 10 days or so which is painfully slow but does help avoid misery. I have been on pregabalin for a while however. I lose track of what length of time I have been taking some drugs for!

[DisneS in reply to involuntarydancer]

Think I might have decided to leave well alone with the Neupro patch and continue with Gabetpentin. The problem is that with the 600 mg ofGaba I am getting break through symptoms every night. I found that the Tramadol was giving me horrendous side effects so can’t supplement with that. Anyway, I’ll leave you in peace now as you’ve been very good. Will have to ask the docs advice when I see him tomorrow (very caring man). Only problem is he asks me to get advice from here and come back and tell him!!!

[LotteM in reply to DisneS]

Would you be able to stand any of the other opioids, such as codeine or oxycodon/oxycontin? If you, print out the paper under the link below; it discusses the use and role of opioids for RLS and has a table with starting and maximum doses for each type of opioid. I found it helpful when discussing with my GP replacing the tramadol.

mayoclinicproceedings.org/a...

[DisneS in reply to LotteM]

Thank you very much LotteM for forwarding that paper on the use of Opiods.

I have printed it and will give it to my GP tomorrow

[involuntarydancer in reply to DisneS]

Yes it might be worth trying a different opioid. It is very handy to have something for breakthrough symptoms. You should also consider discussing changing to pregabalin with your GP. It just might give you better coverage. At least he is interested and concerned. I hope the appointment goes well.

Oh, at the risk of repeating myself, I wouldn’t rule out using neupro for your holiday. Though as I type I remember someone posting recently that their rls abated completely for the duration of their holiday so maybe you won’t need it!

Good luck - I hope you achieve a good system and please keep posting.

[Hidden]

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.

[involuntarydancer in reply to Hidden]

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

[Hidden in reply to involuntarydancer]

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

[involuntarydancer in reply to Hidden]

Thanks - absolutely LOVE the conservative minister quip.

[DisneS in reply to Hidden]

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,

[Hidden in reply to DisneS]

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.

[DisneS in reply to Hidden]

So wonder why they are allowed to grow it legally?

[Hidden in reply to DisneS]

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!

[DisneS in reply to Hidden]

Yeah like most systems in this old world!!