I have PLMD only. It wakes me 3 to 4 times a night and continues until I walk it off. As with many (most?) of you, my sleep architecture is wrecked. In my case I haven't had a continuous night's sleep for 13 years.So, after regimes of Clonazepam, Baclofen, Ropinirole, Gabapentin (twice) and Pregabalin (twice), none of which was effective beyond 2 years, I moved on to low-dose opiates in the form of Buprenorphine patches. After an unsatisfactory start on a single patch, I settled on a 10 and a 15 on either arm, which began to produce results.
I've used them now for 6 months and on good nights, even though I have woken up briefly in between each, I have managed continuous REM sleeps and been PLM free. However, these benign nights have alternated constantly within a 7-day patch sequence with strange combinations of shortscale sleeps (under an hour plus) either accompanied by PLMs of up to 5 in number or, confusingly, being completely free of them. (All I need for a PLM to kick in is 15 - 20 minutes sleep so it's not the fact of their being under an hour in duration).
Now I've just completed two 7-day sequences with barely a single decent night, the majority being as described above - shortscale sleeps either alternating with PLM attacks or none at all. I'm assuming that as seems to be the way with PLMD medications and my neurological constitution, I have now built up a resistance to such effectiveness as I ever experienced with Buprenorphine patches. I shall increase dosage to the maximum tolerated amount and try two 10 mcg/hour patches. When they fail, as is most likely within a very short time scale, I shall cease usage.
I'm desperate now because at age 78 I'm close to the end of my medication options. My GPs know nothing, of course, so I would be grateful for a.) any observations, empirical and/or theoretical, on my experiences with the patches, and b.) suggestions as to what medications I try next. I would favour opiates and know those that might be candidates, but suggestions as to any possible courses of treatment would be welcome.
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dickJones
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Having had 8 or so hours of sleep last night I hope you don't mind me coming at your question feeling quite refreshed. I have used a 2mg N##pr# for about 5 years. I also have 600mg ofPr##abel## daily. The thing that has made the difference to my sleep is Nor###tyl###. I take 40mg before bed and I am sound asleep within minutes.long may it last!
I'm so sorry to hear this Dick.I know a few people on the patch and all have reported that it does not work for 7 days. At most, it covers them for 4 or 5 days. The dose completely wears off and then your body isn't getting any Buprenorphine so goes into opioid withdrawal and the main symptom of opioid withdrawal is RLS.
The doctors and pharmaceutical companies will dispute this but too many people are reporting it.
I suggest you report it via the Yellow Card Scheme. Say that it doesn't last 7 days & causes opioid withdrawal.
As it was effective for you, you could ask for Buprenorphine sub lingual pills. They give a constant dose so will not become ineffective after 4 or 5 days.
Many GPs are reluctant to give pills but as you have shown you do not abuse meds, argue your case.
Prof. Walker would prescribe pills if your GP is reluctant.
I'm not sure of the equivalent dose of sublingual pills for the 25 patch you've been on but your pharmacist can advise.
Thanks, Jools, for your customary support. It's much appreciated.
The duration of the Butec patches, or lack of, however, is no longer the precise issue. It was at the outset and unusually intuitive action on the part of one my practice's GPs had me issued with patches on a 4-5 day sequence. Latterly, however, it's been the eccentric nature of patch drop-out. I might start a 7-day sequence with, say, a good first night, followed by three non-REM multi-PLM nights, a fifth good night, a sixth crap one and a final decent one! There's been no order or logic to the Buprenorphine behaviour over time, but when there's been an okay 7th night, it's clear that the Bup's holding its charge. But right now I'm on night 5 of a second consistently unmedicated sequence in a row, punctuated by non-REM sleep episodes and frequent PLMs. And yet even now the weirdness prevails because where pre-Buprenorphine it would take me 20 - 40 minutes to walk the PLMs off, now it takes no more than 5! It's beyond any patterns or routines.
Re the sub-lingual method, I might give it a go, although I already have dental issues awaiting attention and I don't want to exacerbate them. I shall ask for two 10 mcg patches next time, see what happens and then if, as I imagine will be the case, there's little change, I shall be requiring alternative opiate remedies.
I do hope this bizarre account is of use to some fellow unfortunate struggling with these damn patches! And now I must try to get back to sleep...
My theory on dental issues is that the FDA warning is wrong. Buprenorphine, including the patch, causes dry mouth and it's the lack of saliva that causes teeth issues. I never had dry mouth until I started Buprenorphine. I use biotene artificial saliva products.I know several people who experienced dental issues and they've only ever been on the patch. So Switching to sub lingual shouldn't make a difference. If you have dry mouth as a side effect to Buprenorphine, you'll get it on the pill or the patch. Orange juice slowly sipped over half an hour would contain as much acid as Buprenorphine. I know it's my 'theory' but again, too many people reporting it and the FDA need to do controlled studies & establish the real cause of tooth problems.
Also, the patch gives a steady rate of Buprenorphine over 24 hours whereas the pill gives most of its effects for the 10 to 12 hours after you take it. So taking sub lingually a couple of hours before bed, it should cover RLS/PLM when they are at their worst during the night.
It's worth an experiment to see if it makes a difference.
And I'm impressed your GP realises the patches don't cover a 7 day stretch and is getting you to change them every 4/5 days.
I hope you find a solution that covers your symptoms.
Thanks again, Joolz. Point taken about the dry mouth issue being common to both patches and sub-lingual. I'm always sceptical about one-size-fits-all declarations, individual constitutions varying as much as they do.I'm hoping to get a face-to-face with this particular doctor tomorrow. I've just shifted up to the 20 mgc patch to see whether the Buprenorphine has any life left. What concerns me is that my current sleep disruptions might be due in part to withdrawal symptoms. The Buprenorphine ceased to work up to two weeks ago as my resistance to it increased and now maybe I'm experiencing cold turkey in the form of broken pre-REM sleep and a return to regular PLMs. If so, then titrating to 20 mgc would risk it all over again after they cease to work. Might that be a fair hypothesis?
Also, I ran the possibility of Oxycodone or Methadone as post-Buprenorohine alternatives to another doctor at the practice and he said that to all intents and purposes, one opiate is much as another and if the Buprenorphine had run out of puff, the others would be of little use to me. I thought that they worked on different receptors, but had no chance to pursue that line because my 10 minutes phone time was up!
Buprenorphine and methadone do work on other opioid receptors ( Mu receptors) which is why they work when other opioids have failed.
I've just received the massachussetts RLS opioid register update and it shows that methadone users have the lowest suicidal ideation of all participants because they have the best RLS coverage. Methadone is first choice in the USA for Refractory RLS so tends to be prescribed in preference to buprenorphine.
You could definitely be experiencing mini withdrawals on the patch. As you rightly say, we all respond differently and you may be metabolising the patch very quickly.
I'd definitely try the buprenorphine pill first before switching to another opioid. You may have a couple of bad night while your body adjusts to the timing of the buprenorphine. Good luck with your GP appointment tomorrow.
Hi Dick, if I have understood correctly one of your issues is to do with sleep maintenance. Opioids can and do interfere with sleep architecture so perhaps that is part of what you're experiencing. I have predominantly PLMD and it is reasonably well controlled on 250mg pregabalin. Have you tried going back on medications that worked in the past? I'm thinking that having been off them for a while, there may be some sort of reset for you whereby they work once again.
Hi Amrob. I doubled on Gabapentin and bailed out second time around at 1800 mg, choosing not to titrate up to 2400. Pregabalin was a bit too recent to try again and I was on top dosage when it quit on me. The dopamine agonists won't be re-visited and I'm chary about trying Clonazepam again after reading about possible links with dementia. As if serial sleep damage wasn't enough!
As for the sleep disruptive potential of opioids, I'm now wondering whether the Buprenorphine might, in fact, still be active and currently maxing out on that known characteristic at the expense of its more benign effects, for some so far inexplicable reason. That would go some way towards explaining the relative ease and swiftness with which the PLMs are dispelled on exercise. Food for thought. Thanks, Amrob.
Hi Dick you seem to have tried a lot of different drugsI have had RLS for many years I am 73 years old
I have only used ropinirol I accept the usual side effects as part of my treatment I take 3.5 milligrams per night split 2.5 at 8pm and 1mg at 10pm before bed
I usually get about 6 hours sleep
I have found that a lot depends on what you eat as an evening meal anything high in fat interferes with the absorption and reduces the effect of the drug
As yet I haven't experienced any augmentation I have been taking ropinirol for 20 years
Hope you find a suitable release from this nightmare steve
Thanks, Steve. You're a lucky man for being on the good side of the dopamine agonist stats! May your relationship with a med that can be so effective continue to benefit you, as it does all who dodge augmentation.
Non medicated, my sleep study showed approx 67 limb movements per hour which i understand is at the more severe end of the continuum. Non medicated, I always found that if i could go back to sleep in the morning and sleep for an extra hour or two, then i could get through the day. But working and parenting don't always allow this particular luxury.
I do wonder whether at some point in the future, i could manage without medication by sleeping late in the morning. Most periodic limb movements occur in the early part of the evening.
If you're retired, is this something that you could try?
(Although, I am different to you in that my limb movements tend not to wake me up, i just have very poor sleep as a result of them).
Also, i realise that most people say that melatonin is a trigger for RLS. When i reviewed the literature for melatonin use for PLMD, i found that it was contradictory (in that some papers argued that it was beneficial, others the contrary). My young son takes melatonin and gabapentin for PLMD and this regime seems to be working for him.
I'm wondering if you added melatonin to the buprenorphine whether this would help with sleep maintenance?
Thanks for the thoughts and the link, Amrob. I too have found that between the late small hours and the post-dawn hours there's a circadian rhythm that provides the REM sleep lacking during late evening and night time. I'm currently sleeping downstairs so as not to disturb my partner when walking off the PLMs and to ensure that later morning sleep when she goes to work.
So to have a study that confirms the phenomenon is enormously useful. As well as providing research evidence of an empirical phenomenon, it substantiates the theory that what I've been experiencing during the past two patch cycles is not, in fact, patch extinction but the acknowledged patch side effect of disruption of normal sleep patterns. This evidence is particularly useful because yesterday I had a practice doctor increase my patch strength to 20 mgc and now I must return to the original dosage of 5 + 10 or I'm simply increasing the disruptive payload. I've rung the surgery and am awaiting a call back from said doctor. I'm not looking forward to it because he's one of the peppery old school sort and I'm going to have to fight my ground!
Many thanks, Amrob, particularly for the link, which document is now in my large collection.
Hello Dick, I am sorry to hear about your problems and very worried because my situation sounds very much like yours--entirely PLMD and failing med after med or having intolerable side effects. Currently on methadone and having insomnia and terrible daytime depression, anxiety, etc. Unfortunately I am not experienced enough to offer any advice but I do have a question: you mention how much REM sleep you get or don't get. How do you measure that? Do you use a device? I am looking for a reliable device I can use to monitor my sleep so I can give some hard data to my sleep doctor rather than just perpetual trial and error.
I know this can be a long shot in the UK however if you could trial Subutex (Buprenorphine 2 mg sublingual )you may find this to be the key.
Even though Temgesic , Patches ,Suboxone ,Subutex are all Buprenorphine they most certainly are not equal . For severe refractory RLS Subutex is the by far the most superior.
I am not sure in the UK if you could try drug clinics the kind that help with addiction they certainly have prescribing powers that is who I go through in Australia because GPS are not allowed to prescribe Subutex , they can prescribe Temgesic and Norspan patches. The patches are mcg much lower dose than Subutex which is mg and also gives 24 hour coverage .
Thanks, Shumbah. I’ve contacted the doc who supervised my sleep clinic test. He was the one who directed my surgery to prescribe the Buprenorphine in the first place. I’ve asked for a consultation urgently, preferably face-to-face, both to consider the current Bup situation and medication going forward. Generally speaking, the NHS moves at glacial speed, but hopefully I’ll get something sorted before I’m asleep at the wheel!
When you get it Dick , please cut into quarters place 3/4 in a secure container and break the remaining quarter into mall pinhead size and start very very slow .
It looks small however extremely strong and I have seen people put off from rushing in and taking the full dose night one. You may find a much smaller amount works. If that is the case secure the balance in a safe container out of the light an away from children and pets.
small piece aids absorption under the tongue away from you teeth.go to bed take a pin head every 15 minutes until legs stop. no more than you need.
Thanks again, Shumbah. I’ve contacted my seep study doctor, who’s as close to a specialist as I’m going to get. If he’s happy with a shift to sublingual then my surgery will prescribe accordingly. So here’s hoping!
Unfortunately, I also suffer of RLS and PNLM, and I also have Parkinson’s.
For me those sleep disorders have been really poisonous and just a stretch of several weeks can Trigger an acute deterioration of my neurological symptoms. Anyway, things have been severe for me since they started so very quickly I the opportunity to discuss with one of the Parkinson’s experts in the UK that is focusing on sleep. He advised me to go straight to combination, combining different agents. As a consequence, it's been since 2019 that I'm taking a combination of pregabalin, melatonin, levodopa, zopiclone and magnesium.
Eventually, under this treatment, I still managed to relapse about a year ago with a strong RLS component. It was a nightmare and after just a few months, in spite of the treatment I was taking for several years I still got an acute deterioration of my neurological symptoms again. It is thanks to the help and support of this group that I got on the right treatment track and accepted to take an iv iron treatment as per the Mayo Clinic recommendations. In Parkinson’s it's a bit risky.
But 4 months down-the-line, what I want to tell you is that I'm seeing things in terms of tri-therapy or quadri-therapy, and not just with prescription drugs. I'm taking a combination of pregabilin, melatonin, vitamin B3 and exercising.
I don't know if you are exercising, but I know that when the RLS is back, I generally missed exercising.
As you know, some type of exercising can worsen RLS, but with proper care, you can consider exercising as an additional agent on your medicinal shelf. Same with vitamin B3.
And I strongly recommend to find a neurologist that is comfy adressing sleep disorders. In my experience they hate that. No good.
I am wondering what the chances are that Buprenorphine would help your Parkinson , I have messaged the Michael J Fox foundation about this . No one has tried it , because it slows the central nervous system down it may have some real benefits.
Should you ever try the mg version of buprenorphine I would truly appreciate a message and feedback ..
Hi Enjoy. You’ve certainly had a rough ride, but I’m glad that a meds-plus-activity regime is working for you. I don’t have RLS, just PLMD so my needs are relative uncomplicated. I do exercise, principally via walking the dog through fields and woodland. But because PLMD is nocturnal and occurs in bursts exercise appears to have little direct impact on it. However, any physical activity in age has got to be beneficial so let it flourish!
With others currently using or contemplating using Buprenorphine, a brief PS to my ongoing struggles. The last three 7-day cycles have seen a deterioration in the efficacy of the patches with short-scale sleeps and periods of insomnia prevailing over the occasional linked REM sleep nights.
I’m awaiting contact from the sleep specialist who prescribed the Buprenorphine so that I can get his view on the theory that, rather than this indicating a simple across-the-board failure of the med, it suggests the predominance of the weird but not uncommon sleeplessness side effect. My PLMs have continued throughout the run of the Bup, but they’ve disappeared within 5 or 10 minutes of walking rather than the 30 to 40 minutes needed pre-Buprenorphine.
Given the glacial speed of NHS response times, it’ll be weeks before I hear from my specialist. With 5/6 nights out of 7 wrecked I have no idea how I shall cope until then. If anyone knows of a sleep med compatible with the Buprenorphine I’d be most grateful. I’m seriously concerned about both the short and long term threats to health from serial broken sleep and insomnia.
Hi Shumbah, Joolsg and others who responded to my original post concerning my struggles with Buprenorphine patches. Whilst this has been my personal story, I’ve hoped that the data generated might be of help to others using, or hoping to use opiates to combat RLS/PLMD. Here’s the update on my request to my surgery to switch me from patches to pills.
Somewhat contrary to my expectations, a week or so ago my GP implemented the switch from the failing patches to sublingual tablets and whilst not without issues, the latter have been markedly more effective. However, she then told me yesterday that she would be unable to prescribe a second 7-day course without ratification from my ‘consultant’’, Dr Davies.(I don’t actually have a consultant, but it was Dr Davies, my sleep clinic specialist who originally prescribed the patches and the surgery normally won’t move on opiates without his say-so!)
So as required I rung the sleep clinic only to be told that Dr Davies no longer has a secretary and would almost certainly not be in a position to provide the surgery with the ratification re the sublinguals before the current course runs out in 6 days. I run out on Sunday night, which means I’ll be completely unmedicated from that point on.
I called the surgery this morning to request a week’s extension in the hope that within that time Dr Davies will give them the thumbs up for continuation. I’m awaiting the call back now. I do have one week’s supply of patches left. Would it be in order to fall back on them if the surgery continues to deny me a second course of sublingual tablet? Can one shift within 24 hours from the one to the other?
Dick, yes you can. They are 7d patches, right? It does take about 12h to become fully effective. When I change my 7d patch, I do so in the morning. Usually it works by nighttime.
It is however awfully frustrating that the sleep specialist does not seem to have time to take up your request, have a look and ring or mail your surgery. Hopefully it resolves soon!
Thanks, Lottie. I assumed that a simple crossover which took account of absorption period would be fine, but within the data vacuum that comprises general practice”s response to RLS/PLMD I needed to be 100% sure of my ground. That’ll give me a barely adequate fall-back strategy if I’m still being denied appropriate treatment in a couple of weeks’ time. And if a little imagination and compassion on the surgery’s part has me eating my words before the sleep clinic steps in, I’ll happily share the meal in public here!
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Advice re Buprenorphine patch
