Spoke with my GP yesterday who mentioned the new guidlines re Oxycodone and pain. ie that it's not found to be effective long term and I might have this slightly wrong but they are suggesting that Oxy is not always to be the go to option for pain scripts in the future
We were was talking about my script for RL, (augmentation). Not for pain which I pointed out. But it was obvious that my GP is thinking that he may be under pressure to change my script. I have been taking 30mls daily of Oxycodone for almost 2 years. It is effective and as a low dose, it stays the same and I have no issues with having to increase with use.
I am starting Amatryptalin this week to see if that works for RL. Apparently it does for some. I will carry on with the Oxy Then presumably taper down the Oxy in a few weeks to see if the RL has diminished.
I would appreciate any ones experience with Amytrytaline. I wonder also if anyone who is taking Oxy for RL has had their GP suggest that they change their medication because of the new pain,ned guidance?
I have also heard that tapering off Opiods can bring on RL. So it's all a bit confusing. Uf I taper the Oxy whilst on the Amy, how will I know if the Amy has been effective if the Oxy withdrawal causes RL?
Sorry! this is a little long winded.
Anyone experience and advice would be helpfull I do not want to return to the miserable horror that us 24/7 restless legs, (and arms).
Jane 🤔
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There are new guidelines for using opioids for PAIN WITH NO OBSERVABLE REASON ONLY
There is NO DIFFERENCE WHEN TREATING RLS OR PAIN WITH A CAUASE.
If your GP does not understand this I would change as it is very obvious and if that is confusing them I'd be worried about their competence. There is a thread on this here:
It's only chronic primary pain so if you have a reason for your pain, any reason there should be no change - if you have no reason to be on them you really shouldn't be on them and alternatives put forward to explain the reason for pain that has no (apparent) root cause.
Be careful with the Amitriptyline - it may work for pain but it can exacerbate RLS, it did for me and many others on here.
Dropping the dose of the Oxycontin can bring on restless legs symptoms (even in people without RLS) BUT - if you do it slowly with another adequate drug to control the RLS then there should be little problems (however I don't think the Amitriptyline is the solution imho).
I am on the top dose of Targinact (contains Oxycontin) and until it looses its efficacy or I find another drug I will not be stopping it - my GP is not only knowledgeable but is understanding and sympathetic. Also he is not that stupid that he can't read a simple report so I can't see him changing anything.
I will stick with my GP for now, after all he was understanding enough to prescribe the Oxy when I requested it ..... after much research.
I suspect as the guidlines are new and as I dont think he's had much experience with RL, (He didnt know the term augmentation with regard to RL) that he's not clearly thought out the Oxy RL situation in light of the new recs.
I will highlight the nice guidlines to my GP if necessary. And of course would chang GP if had to. Thing is mine has always been understanding in the past.
I will try the Amy .... if it dosnt help then I've lost nothing. Thing is I sleep very little and I've heard that this drug can help with sleep ..... always helopefull!
My gut reaction after suffering from this grim illness for a long time and having tried every drug out there .. is that I will be staying on ocycodone until there is a viable option.
What is the difference between mine and your script?
Hi, as raffs says the new guidelines for primary chronic pain are under consultation at the moment. Thye do recommend that opioids are not used.
Also as raffs says, they do NOT apply to chronic pain that is due to an underlying condition.
If your GP has prescribed oxycodone then, it's depends what he has prescribed it for i.e. is it for primary chronic pain, chronic pain due to something else or is it specifically for RLS?
If it's prescribed for primary chronic pain and NOT the others then he can't justify continuing to prescribe it.
However, "Targinact" which is Oxycodone and Naloxone IS licensed for severe idiopathic RLS after failure of dopaminergic therapy.
If you have suffered augmentation due to taking a dopamine agonist then you have failure of dopaminergic therapy.
Hence your GP can prescribe targinact for RLS, it's just a matter of whether they're willing to do that.
I am prescribed Oxycodone for RL only, no pain. I developed Augmentation after trying all the usual drugs 🤨
The RL spread to my arms and effected me 24/7. It was relentless.
Not quite sure why my GP prescribed Oxycodone as opposed to Targinact, other than cost or that that was the med I asked for.
I suppose now that I am on it and considering that I am on it due to failure of dopetmanetgic therapy, I dont see why they would want to withdraw the drug from me.
I havent found anything else that works. (yet).
Just wondering do you know, or Raffs too if reading this .... of many people that suffer from sevear RL and or augmentation that have been refused Opiods?
In that case your GP has no justifiable reason for witholding the oxycodone.
I asked for an opioid when I was attempting to withdraw from pramipexole due to augmentation My GP refused and discussed seeing a neurologist privately.
I have read many similar cases.
Luckily, I managed without an opioid by withdrawing very slowly. I was also taking gabapentin, which works for me. At least I think it does!
In fact it works so well, I wonder if I need it all.
I also had a back up store of codeine phosphate which I was prescribed for acute pain, but never took.
No gabapentin didn't work for my RLS at all when I first took it. In fact even after two months it was still, apparently not working. I was taking it for nerve pain, it did work for that. but not RLS.
However, I was suffering augmentation at the time due to taking pramipexole.
I just took it on trust that it would work. I did find as I reduced the pramipexole the augmentation faded, then by the time I stopped taking the pramipexole altogether my RLS symptoms virtually disappeared.
You don't really know it's going to work until you've entirely stopped a dopamine agonist.
I can't with 100% certainty say that gabapentin is working for me now. It may simply be that my RLS has gone back to how it was years ago before I took an antidepressant for months which made my RLS much worse and led me to taking pramipexole.
Possibly the only way I'll really know is to withdraw from the gabapentin.
I wasnt taking anything except low dose Chlonazepan when my Augmentation started. I had taken all the usual suspects prior to that. It was really strange. My legs became worse spreading to my arms and it continued throughout the day.
I was considering assisted suicide, I couldn't see how I could carry on with the grim relenting horror of it.
Then I presented at A &E early one morning, I was a given a 5 ml Diazepan, ha! and told to ring my GP which I did.
Asked him for an Oxy script, (I had been researching) and thank goodness, I could suddenly lie down, sit down, sit on a bus, go to the cinema ... Life changing 👐
Sorry for the history, just having a bit of a moment looking back!
Interesting that you suffered such a reaction to clonazepam which is a benzodiazepine. Not that I disbelieve you, but -
It doesn't seem logically possible to suffer augmentation from taking a benzodiazepine.
Dopamine agonists cause augmentation - because they "downregulate" dopamine receptors and raise dopamine levels. The only other drug that causes augmentation is L Dopa i.e. which also raises dopamine levels.
The thing is the reslestless legs were getting steadily worse over a period of a few years. I tried the DAs and other stuff to no avail.
So stuck on just a 0 5 ml Diazepan per night which did nothing. Then there was a period over a week or so when it suddenly got hugely worse and the augmentation started.
Dont really know what caused it. I only know I had it through researching and so self diagnosed. GP at the time no absolutely no help.
I have continued to gain more awareness listening g to you guys on here and have learned a lot.
When I look back, it was only a couple of years ago but it was such a blur at the time 🤨
I dont want to take opiods, but hey if that works I feel there is no choice. Currently that is, things change and develop though dont they? 😊
If your Dr is understanding then hold on to them. I would refer them to the BNF prescribing guidelines on the use of Targinact - Oxycondone and Naloxone:
The Oxycodone is a longer lasting preparation than the Oxycontin and the Naloxone is meant to help with possible constipation, in reality its so you don't crush and inject them which you can do with your prescription (not that I am advising that!).
I see from taking a look on NICE that they no longer seem to be displaying the Targinact pathway as predominantly as they used to but there is info here:
I find opiates, every one I have tried as superior in treating RLS - they control the symptoms best and have the least side-effects for me. I also have a few other pain issues so they are well controlled with the same drug - 2 birds and the 1 stone.
I am at present trying to decide whether or not to go ahead with Project21 and the cannabis study, it will cost me a couple of thousand pounds over the year but would hopefully mean I could stop all other drugs giving my body a little rest from it all.
Haven`t heard of that study? Would that involve being a day patient?
An appealing thought to get rid of the toxic stuff we imbibe. But would you be without some kind of back up the trial I wonder. I just could not cope with life as it used to be.
Project21 is in part run by Professor Nutt - a very knowledgable expert on drugs and their use/misuse. He got fired from the head of the drug advisory council in the UK after he pointed out that MDMA use is safer than horse riding:
Of course there is no way they will outlaw horse riding and no way they would legalise MDMA (too much to be made from keeping it, along with other drugs illegal - but that is another saga!) and so the UK media helped the public in being morally outraged and his head had to roll.
N, E, way - back to Project21. It is a way of getting individuals access to medicinal cannabis while at the same time having them followed and studied:
I, along with a couple of others on here I think, registered last year and now there is an option to access it.
You need an initial online consultation with a specific consultant (£110) and IF, IF after you pay your £110, they think you can have it you are allowed access to a private prescription which cost £110 a month and you must agree to 3 monthly reviews at, can you guess? Yup, £110. It means a 1 year outlay of just £1870 if I have calculated it right as opposed to £0 I pay at present for prescribed drugs. Mind you I do supplement prescribed drugs with cannabis but at nowhere near that spend over the year but then again, it means I don't have it as much as I would need.
So presumably you would be prescribed as much as you need, otherwise then what? And do you know from personal experience that cannabis works for those with sevear RLs?
Do you use the oil currently take it in a different way?
So if I had the correct dose my RL would disappear? Wow imagine that!!
Thanks again to you and Minerver for all the info.
Nothing stays the same ..... Thank goodness for research and activists out there.
The question should be - what if it doesn't go away?
IF it goes away and I am symptom free and have reduced/stopped prescribed drugs and then comes back my first thought would be to check what I have done to bring it back, if I can't work it out I would up the dose of cannabis until it did work OR if it couldn't bring things back under control I revert to the drugs I am currently using and hopefully with a bit of a break I'll need less Targinact and it will be longer before I need to use a DA again.
Jebus - I've been on Targinact for a couple of years and am on the max dose - I can tolerate opiods very well but need a lot of them to be effective unfortunately. I have had it augmented a year ago with Pregablin and take 300mg a day which I want to stop. Even with all that I still use cannabis as much as I can get it. Only then does my body start to quieten properly and I can function really well (I completed a diploma a few years ago and every assignment was written with as much cannabis as I could take so I could sit and focus and managed a distinction with a merit as the lowest mark - so much for cannabis making you lazy and unable to focus)
I take the highest rec dose 'allowed' for RL. There was a time a year ago when I felt it wasnt lasting like it did. I played around a bit with the dose and it became fine again. I have heard there are folk who have been on Oxy for over 20 years on a low dose.
That keeps me going cause I'm always scared it might stop working.
By the though you never know Cannabis might be prescribed mainstream , by then 😉
It's not CBD oil its proper cannabis. You can get it to eat, vape or smoke and you work with your prescriber to get what suits you. If I go for it I assume I can get the oil for longer periods and to vape/smoke for break through. Its not for RLS though you have to have pain issues that haven't properly responded to 2 or more drugs, anxiety, epilepsy and chemo induced nausea. I will be getting it for pain and it will be a nice side-effect to report that it helps my RLS too.
I use cannabis regularly, I have a friend who grows for his Mrs and himself - she is menopausal and doesn't tolerate many drugs and he has damaged discs. I get a little over flow from him. I don't get charged much and I know I am not aiding any real criminals or terrorists. I find it very good for RLS but find it hard to go out to smoke it in the middle of the night - my lungs/stomach can't take the smoke and my body can't get itself shook enough to go outside in the wind and the rain (I live in Ireland and we only ever get wind and rain, its just warmer rain in the summer).
I find the cannabis works OK for pain but I need to take a lot to cover all my basis so still depend on prescribed drugs. I am hoping that with this study they will allow a large dose as there is no physical issues with it as there are with opioids/Dopamine drugs/etc. Worst case scenario I take too much which causes anxiety, it wont be nothing new and for me it is easily managable.
Sleep can be helped by adding a small dose of pregabalin at night- that’s what I take and it definitely helps. I also use zolpidem once of twice a week and it also helps with sleep. Illegal cannabis is also good for sleep. Like Raffs I’m in project 21 but not yet been contacted for an appointment with a presciber. I may chase them up.
I honestly don’t think you should touch Amitriptyline- you will be up all night with RLS.
Honestly the oxycodone won’t stop the RLS if you’re on Amitriptyline.
However, as you say, you can try it to see if you’re the rare 1% who doesn’t get RLS with Amitriptyline. I’m just surprised any doctor would prescribe it when it’s listed as a no no for RLS.8
Some good nights and some bad. I think being on Ropinirole for nearly 20years has permanently damaged my Dopeamine receptors so even on oxycontin, I still have RLS most evenings ( but much milder).
I get my best sleep between 6am and noon. I am officially a vampire.
I’m delighted your RLS is under control. If it ain’t broke....
Just show all the evidence to your doctors and insist you remain on your low dose oxy.
I presume it’s because I was on Ropinirole 4mg for nearly 20 years and the damage it caused is permanent. I know several others who still have RLS despite being on opioids.
I don’t think raising the dose to 30 or 40mg a day would make any difference but I might talk it through with my neurologist at my next appointment.
That's what I don't get! So many people say amitriptyline made their RLS worse yet I've read things that say it only makes PLMD worse and that doesn't matter because you're asleep.
I also recently read a paper dated 2019 recommending amitriptyline for RLS to help sleep.
A couple of years ago I read something that said amitriptyline is an effective antidepressant.
If I was a conspiracy theorist I'd think there was somethong sinister behind these attempts to promote amitriptyline.
For me, at best, the two times I've taken it, it was useless.
The second time, since I was already suffering worsening augmentation, I just assumed that it was that, not amitriptyline.
This is the excerpt from the USA RLS foundation- they have over a hundred thousand members.
“Antidepressant Medication for RLS Patients
Depression and anxiety are significantly more common in RLS patients. Even though most antidepressant medications tend to worsen RLS, therapy should not be withheld for serious depression/anxiety problems, although RLS treatment may need to be increased.
Antidepressant drugs that tend to worsen RLS:
– Older tricyclic and combination antidepressants:
amoxapine (Ascendin), amitriptyline (Elavil), chlordiazepoxide and amitriptyline (Limbitrol), clomipramine (Anafranil), doxepin (Sinequan/Silenor), imipramine (Tofranil ), perphenazine and amitriptyline (Etrafon), perphenazine and amitriptyline (Triavil), trimipramine (Surmontil)
– Atypical antipsychotic drugs (often used to treat depression and anxiety): aripiprazole (Abilify), clozapine (Clozaril), olanzapine (Zyprexa), risperidone (Risperdal), quetiapine (Seroquel)
Antidepressant medications that do not worsen RLS:
bupropion (Wellbutrin/Zyban) – may worsen anxiety and cause insomnia
trazodone (Desyrel) – weak antidepressant but may help promote sleep desipramine (Norpramin) – an older secondary amine tricyclic
antidepressant and based on clinical experience, may not worsen RLS protriptyline (Vivactil) – secondary amine tricyclic antidepressant nortriptyline (Pamelor) – secondary amine tricyclic antidepressant nefazodone (Serzone) – SSNRI drug not used frequently as it may
cause massive liver damage.”
Clearly, as soon as you start to ask more people, it becomes clear that Amitriptyline does worsen RLS ( not just PLMD) for the vast majority.
Big Pharma is terrifying- they have no conscience whatsoever. My friend ran the campaign to ban plastic mesh in England and succeeded BUT GUESS WHAT? Big Pharma are now actively & aggressively marketing plastic mesh to treat women in Africa, India & S.America.
I suspect they will manipulate data and push to keep peddling it to people who have trouble sleeping. Complete ethics failure. Same with dopamine agonists- they know how prevalent augmentation is and yet refuse to send out warning letters ( I know because I’ve asked). They rely on the leaflets stating there is a risk of Augmentation to avoid any responsibility.
I could rant for hours Manerva. At least the head medic at the Yellow Card scheme in the UK is aware of Augmentation and knows the difficulties with getting neurologists to force big Pharma to stop peddling dopamine agonists. He was very helpful and supportive but felt that the ABN would have to support any campaign. Dr B(& the US experts ) felt that wouldn’t happen as they had to fight hard to get consensus on max limits in med leaflets. UK & Europe are still of the belief that 4mg is acceptable!
Joolsg, check your emails - I got one some time back, I'll dig it out and PM you the info.
I've thought it out last night - no RLS but no sleep so not a bad night really - I am going for it. I don't have to stick with it and I do want to see if cannabis alone can help me. Fingers crossed. 🤞🤞🤞🤞
I was put on amitriptyline and wanted to jump out the window.
Made my RLS 1000% worse.
I’ve only ever seen 1 or 2 people on here who didn’t have that result.
As it’s a tricyclical anti depressant it’s on the list of meds to avoid if you have RLS.
I’m on 25mg OxyContin each day and 50mg pregabalin.
I empathise with the assisted suicide route- I also have considered that- particularly during augmentation and withdrawal from Ropinirole.
Let us know how you get on with the GP. I’m sure we’ll have many RLS sufferers on opioids in the UK facing this same issue and many GPs who don’t understand the distinction between pain and long term use at low dose for RLS.
Everyone always assumes I’m on oxycontin for pain.
You can also refer your GP to the long term opioid study in the USA which is aiming to prove low dose opioids work long term for RLS with no addiction issues and no increase in dose.
The thing is that's the problem for me. My endo has seen a good success rate with some on Amytrip hence starting it in my 'plan' And the idea being that I take it for 4 or so weeks and then reduce the Oxy to see if it's worked. But how do I know if it's worked if the withdraw from Oxy is causing RL to be worse. Hummm
I am also tempted not to bother, but then what if I am one of those it does work for?
The whole idea of the trial is to come off the Oxy. Oh and I've heard Anytrip helps with sleep .... Something that has alluded me for a long time .....
I will go ahead and let folk know how it goes.
Just out of interest, can you remember how long it took the Amy to make your RL worse?
About 2/3 days. Amitriptyline is listed on all RLS specialist sites as a no no. After dopamine agonists the only meds that will be effective long term are opioids and alpha2delta ligands.
An Endo will know even less about RLS than a neurologist and they know sweet FA.
Don’t let them take you off oxycontin! It’s clearly helping your RLS so why change?
Lack of sleep can be helped with pregabalin low dose (50-100mg) at night and that also helps RLS.
That’s the advice I received from Dr Buchfuhrer, one of the world experts on RLS.
Reducing Oxycodone will result in RLS- a common result of opioid withdrawal.
I am thinking now I'm going to listen to you .. and Raffs and Minerver on this Amytrip dilemma.
If it's a big no no on all the specialist sites ...
Your right. I have something that works, there is a lot of social pressure and stigma re being on opiods. But looking at the chart you sent the link for reinforces that most people that take Low dose opiods are carefull . My dose has remained the same for me over 2 years.
I believe I tried Pregab at some stage and I think it made me fall over and feel nausea. So Il leave that one.
Amitrip might make you sleep IF you don't have RLS. I took it for depression in my pre-RLS days and it did help with sleep. In fact I spent most of the day asleep as well as the night.
I'm on 50mg of Tramadol. I do sometimes get some breakthrough symptoms but to a manageable extent.I accept this because I don't want to increase the dose due to side effects. Periodically, it stops working so I take a drug holiday for a month and it works again. X
Maybe you could try another opiod and then switch back when that looses its effect. If heard that with some opds you can change straight from one to the other.
I am sure one of the experts will jump in if I am wrong on thos one ...
Hi I mostly just grit my teeth and bear it. And take a sleeping pill occasionally. I'm retired so I don't need to be alert the next day.So I can cope short term.x
I have read that theres some that switch opiods when they loose efficicy and that when they switch back down the line the original oo works again.
Sorry to say I think you have a bit of a distorted view of things. Whether the UK is "behind" or not in terms of recommending opioids are NOT used for primary chronic pain or not I can't say one way or the other.
It does seem however, that the UK is apparently behind some countries as regards recommending that opioids ARE used for RLS.
It also seems that doctors in the UK are slow in catching on to recommendations that dopamine agonists are NOT used for RLS.
How this compares to "commonwealth" countries, I'm not sure. Judging by this forum, which I recognise may not at all be representative, a lot of people in other countries are still being given such drugs as Sifrol and I know in at least one case of a member having to travel abroad to access a safer and effective alternative.
As regards "censorship" having spent some time in Russia, I'd say you can't say how much censorship is being applied in a country from within that country. You might think other countries are being censored, but you may not know about your own country.
If there is any "national" censorship in Google in can easily be circumvented by using a VPN. That is, in countries where it isn't illegal to use a VPN e.g. Russia.
One of the main problems in the world is that countries think themselves as different, better, greater, ahead or more important than other countries. Especially countries where people think like that. This is increasing and consequently the world is getting a darker place.
Since RLS is a global human issue , like other global issues, it would to be good to think that people share their knowledge and experience without frontiers and I don't think there's any value in claiming any country is any better than any other.
Hi there, I've been on Oxy for several years at varying low doses, I spoke with my Neuro as I wanted to come away from the opoid and he said " I don't know why you would" so I tried the pain clinic and they had no clue, it's impossible to manage severe RLS by using your mind and breathing techniques,. Well for me anyway. So ditched pain clinic and agreed to work the practice nurse and my GP to manage my pain.. I currently take 20mg Oxycontine prolong release and I have a bottle of oxy liquid for the in between times short term release. I can not see a way out for me, if I miss a dose of opiate I feel like such an addict. I've have heard about a wonder drug called LDN which is apparently cheap but the NHS will not licence it...that's all I know..I'm sorry if I've been no help, but hopefully you'll take some comfort knowing someone else is riding the storm with you as it were.. all the best, Neil.
You are not an addict. You are dependent on your meds in the same way diabetics are dependent on insulin. Low dose
Opioids are safe and effective for RLS and your doctor sounds sensible and knowledgeable.
I’ve heard of one or two people who’ve used Low Dose Naltrexone successfully- but I’m not sure I’d want to stop my opioid treatment first to see if it works.
If any of us miss a dose of any of the meds we take for our RLS, we will feel withdrawals. And we are not addicts when taking gabapentin or any of the dopamine meds and such. And you are not a addict when you miss a dose of your opiate, so please take comfort from that. Being an addict is craving for the opiate, you are NEEDING to take it, to stop that craving, not because your RLS is needing it.
Good morning Jane, many thank for your kind words they really mean a lot. The RLS in my whole body is managed now, however the cocktail of drugs leaves me drained. There are days when I feel I can take on the world then the day after I know why I can't. I have reduced the dopermine agonist by half because I was becoming so impulsive, for example if have a craving for a specific type of ice cream at night, this meant ordering pizza just so I could get ice cream delivered 😅, I would buy things from Amazon and not remember doing it, thankfully this has all calmed down now and my wallet is thankful. RLS is a strange beast, I remember the uncomfortable restlessness from a very early age, maybe aged 5, and I was called a fidget, my parents were strict so sitting still when told was impossible and often I'd get told off. I was sickly child, had severe Eczema from 3 months old and spent two of every year for 12 years in hospital from age 15, I mention this because I was one of the first people to try immune suppressants as a cure for Eczema, I tried two different ones and I wonder as we do with Sherlock hats on what started it the RLS. I don't know if it's the same for you, but when mine is at its very worse I can't be touched, having even a loved one touch me makes my skin crawl, I will sleep away from the bed if with a partner and be awake all night. Personally I find it a lonely journey, as those who have heard of RLS casually call it " oh that thing with the legs, my nanna had that". Anyhow I've gone on a lot here, I do that, could talk for England lol. Hope I've not been a bore, if there is anything you would like to know about me please feel free to ask. Hope you have a fab day.
I hear what your saying. I feel too that I am dependant on Oxy. It's a fine line between addiction and dependancy. If you keep wanting more and more its addiction. If you stick to your dose and are carefull ... then you are doing your best with what you have to manage your symptms .
I know what you mean about when you miss a dose - that is the nature if the beast.
My RL is sevear and like you theres no way a spot of mindfulness would work to eradicate my symptons. I need the drug .
I am pleased I have Oxy, Udmf I didn't have a drug to cure my RL. I wouldn't be able to carry on without it.
I understand why you want to come off. But IT WORKS and haleluya!
You will be able to switch when the right alternative comes along. So hang on in there. And of course, eventually a cure will I am sure be found .
Thanks for reassuring me Neil, and I want to do the same to you. Life is short and we have to do the best with what we have.
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