I was just wondering if any of you are under the sleep team at Guys hospital and also if you have been prescribed Buprenorphine from them. I am due my next appointment in a months time and am wondering whether it is worth asking them. My GP was persuaded to put me on 20mcg patches which work relatively well during the day but like everything else I have tried, they aren’t helping at night. So I was going to ask about the tablets( my GP can’t prescribe them) as apparently they really help at night. I would really grateful for any feedback…thanks so much. 😊
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Sheelaghj
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I'm hoping that Joolsg may know or have some advice.
I wrote to the unit at Guy's over a month ago asking how they treated RLS and haven't had an answer yet.
However, I note that their website has a link to NHS guidance on RLS - which of course talks about dopamine agonists, as well as gabapentinoids and mentions codeine...
Hi SheelaghjI am aware that Guys are still prescribing the Rotigitone patch, on the grounds it doesn't cause augmentation. I disagree with that and prefer to follow the top US experts who wrote the Mayo Clinic Algorithm. They are all VERY clear. All dopamine agonists WILL cause augmentation for everyone.
I am not aware of anyone being prescribed Buprenorphine by Guy's hospital yet.
I am on 0.4mg Buprenorphine pills. They are not redlisted in my area so my GP was happy to give me a trial.
The pills worked from the first night. My IRLSS went from 38/40 to 0/40 instantly.
I have been on the pills for 3 years. Zero RLS night or day and I sleep 8 or 9 hours every night. No tolerance; I am still on the same low dose. No loss of efficacy.
Pills often work better because they give out most of the dose in the first 8 hours and then continue to work for a further 16 hours. So they cover RLS the most when it is at its worst, between evening and 7 am in the morning. The patch gives a more even dose throughout every hour of the day and night, so is better suited to pain relief. However, the patch clearly does NOT last the full 7 days. There have been many reports on here that the patch lasys 4 days at most and then RLS kicks in for the remaining days.
I have not had any tooth problems with Buprenorphine.
I do hope Guy's agree to monitor the prescription of Buprenorphine. They can write to your GP and recommend an initial one month trial and agree to review you every 6 months. That way the GP can comply with the red listing rules. They are prescribing as recommended by a sleep specialist who is monitoring you every 6 months.
As discussed in my earlier exchanges with you i have had success with RLS relief by use of buprenorphine. My problem which I know you have experienced is very severe nausea especially when trying to sleep. My GP has agreed to trial Zofran bit i have not yet started on this. My GP says this drug with increase my anxiety factor?
I have great difficulty with the patches when it comes to knowing when to change. i had good advice on this site from Lotte who suggested "bridging" with use of a low dose buprenorphine tablet.
In your reply to Sheelaghi you said that tablets give out most of the dose in first 8 hours and a lower dose for last 8 hours. Is this a generally accepted situation? My concern is that my nausea was cause by the higher dose provided by the tablet at the beginning and I had hoped that the more even dosage from a patch might help but it didn't
I am now in a quandary as to whether to stay on patches or go back onto tablets ?
Last night I had a very bad experience when I think my 15mcg/hour patch ran out leaving me with what I suspect was a panic attack I was being hot then cold, had nausea and generally felt anxious. So at 5am I took a 200mcg tablet and replaced the old patch with a new 15mch/hour patch. I am still struggling.
Incidentally whilst I have not had a problem with my teeth I have developed a sore tongue.
Hi! I'm glad you wrote about buprenorphine and nausea.... I have been trying to use it but I have had severe nausea.... I didn't link it to the buprenorphine until your comment. I have zofran but it doesn't completely take away all the nausea and it wears off. Hope you have better luck.
I used medical cannabis for my severe nausea on Buprenorphine. I used cannabis every night (0.3ml of cannabis oil with 20% THC) and the nausea disappeared within days. I stopped the cannabis 10 days later and the nausea had gone.Chemo patients use cannabis to settle nausea when zofran fails.
This article explains the pharmakinetic properties of Buprenorphine. It states the half life of the drug is around 30 hours, in other words you still have half the drug in your system after 30 hours. Other studies say 24/25 hours and I suspect each person metabolises it differently.
This article also states that Buprenorphine levels in plasma are verh low 10 hours after dosing. So the most effect is in the first 10 hours after taking the pill.
I am so sorry you are still experiencing the severe nausea at night.
Mine was completely controlled/stopped by taking medical cannabis. That is still an option for you to try.
I didn't take zofran because the side effects looked too worrying and the cannabis worked.
If I were you, I'd try the zofran for a few days. If it increases your anxiety, you can stop. Then you can try medical cannabis.
I can't comment on the patch versus the pill because I have never tried it.
Did you suffer anxiety before you started Buprenorphine? Has your GP discussed an anti anxiety med like diazepam for when you experience the attacks?
Certainly opioid induced panic attacks and anxiety seem to be common, especially in the first month or so.
Are you aware of any comments as to how long before a patch starts to release the drug into the bloodstream?
I do not really understand the "buprenorphine levels in plasma (in bloodstream?) are low after 10 hours" statement. Does this mean 10 hours after taking a tablet?
My GP reluctant to talk about medical cannabis but has prescribed Zofran and I will start a short trail next week. he warned of anxiety side effects. I did NOT have ant anxiety or depression before i started on buprenorphine.
Had another awful night last night with sweats, anxiety and nausea all waking me at 4am. Does that sound like an opioid panic attack? I am currently using a 15mcg/hour patch which has only been in place approximately 2 days
Yes, it means that 10 hours after taking the tablet Buprenorphine levels are low in plasma. So the tablet is most effective for the 8 to 10 hours after you take it.Twitcher's comment is interesting. You should try a lower dose patch to see if it helps.
I know the patch is supposed to deliver a constant, even supply but I do not know why it stops working for many at day 4 or 5.
Medical cannabis cannot be acquired from your GP. You have to pay a private cannabis clinic and they access your medical records.
Try Curaleaf or Lyphe clinics.
You do seem to be having very strong side effects from Buprenorphine. The sweating is common, as is the anxiety. But the pregabalin should be helping the anxiety. Perhaps you need a higher dose than I take.
Ask your GP for options. Perhaps 50mg or 75mg pregabalin will help, or a diazepam for when the panic/anxiety happens.
Yes i am very intrigued by 707twitcher's comments which seem to fit my middle of the night problems. So i think tonight i am going to remove the patch and take one 200mcg tablet on the basis that there is a lot more buprenorphine in my system than i need.
I think your comment about anxiety and pregabalin makes sense as well so i will increase my dose from 25mg/day to 50mg/day.
707twitcherand i have been "backwards and forwards" on my situation since we last "spoke".
Basically we believe that for various reasons I got too much buprenorphine in my system and that led to a lot of side effect problems (nausea, being the main one) and even though this ensured I had a barrier to RLS it was very unpleasant and sleep affecting.
I have stopped using patches and taking small doses by 200mcg tablets until last night when I went to bed without any "barrier" except the buprenorphine in my system ie the "leftover " from the previous night's single 200mcg tablet (assumed effectivity low after 6-12 hours). The RLS returned and was dispatched with a single 200mcg tablet. However i still have a degree of nausea.
Our conclusions are therefore that:-
-I need a low dose ( probably a 5mcg/hr patch) to block my RLS
-The residual nausea is caused by the relatively speedy withdrawal from buprenorphine and that buprenorphine because of it's extended half live does need to be reduced very gradually (as with pramipexole)
I am expecting to collect some Zofran and some 5mcg/hr patches tomorrow and hope then to get some stabilization of my needed meds
Have you any experience of buprenorphine withdrawal (speed of and side effects). i am aware of your problem with nausea and solving with medical cannabis which i might have to resort to.
I have never had to consider withdrawal from Buprenorphine, so can't comment, but I always follow a VERY slow withdrawal from any drug after the horrors of DA withdrawal.Good luck.
I see from your prior posts that you were taking two 200 mcg sublingual buprenorphine pills, and that was controlling your RLS, but you were bothered by side effects. And then you tried a 15mcg patch. While one might think that 15mcg per hour approximates the 400mcg you were getting via the pills, absorption differences between the two delivery methods mean you are getting double that. I found that a 7.5mcg patch has roughly the same effect as 400 mcg in the pill/strip. I did find a study about the dosage equivalent differences, and can try to find it again for you if you need it.
So, given your initial hope that the patch would produce less nausea (seems reasonable; that may be why it is better for my constipation), I think maybe you should try a 7.5mcg patch instead. And try switching it after 5 days. If you do this, I wouldn’t keep the old patch on after applying the new one. Probably better to keep the dosage in your system fairly even, rather than have the possible spikes caused by doubling up for a little bit. If that works for you, after a few weeks you could maybe try switching at 6 days instead of 5, especially if you have have some pills handy to backstop you. As I said below, 6 1/2 days seems to work for me. Keep in mind that it takes a few days after changing doses (if you go from 15mcg to 7.5, or if you add a 200mcg pill occasionally) for the level of buprenorphine to even out in your system. That's not a problem - just keep it in mind when assessing what dosage is working best for you.
It doesn’t sound like your episode this morning was RLS - more anxiety? And if you’re on a 15mcg patch and added a 200 mcg pill, you probably just made your side effects worse.
If I understand you correctly you seem to be saying that my 15mcg/hour patch (equivalent to 0.36mg/day) is too high a dose compared to 400mcg of tablets (0.4mg/day) because of the mode of absorption?
I thought that the patches were exhausted after 3/4 days because I was getting increased side effects and so I am currently overlapping the patches accordingly. If you are correct (and I do not say you are not) then I am certainly putting much more buprenorphine into my system than I need hence the very bad nausea and sweats during the night. Last night i was woken at 4pm with anxiety, severe sweating (and it was certainly not RLS)
You also seem to be saying that even if absorption from a new patch does not start immediately (what do you think is the starting time in your opinion?) there is enough drug in ones system to not need overlapping of patches?
I only have 10 and 15mcg/hr patches at moment. Is it ok to cut to 7-5mcg/hour? I will certainly let you know what happens next
I appreciate the time you have taken to answer "my cry for help" and hope you can confirm my understanding of your analysis
Yes, you understand me correctly. I posted yesterday with a conversion table that basically says the correct dose for a patch equals the mcg dose of the sublingual divided by 60. In your case, 400 divided by 60 = 6.7. The closest dose to that is 7.5.
The only instance when overlapping patches might make sense is if you wait until the last minute to add a new patch. For me that’s the 6 1/2 day mark. Overlapping is trying to compensate for having gone a few hours with a not fully effective patch. If you switch at the 5 day mark (to start with), you shouldn’t have lost any effectiveness, so no reason to double up.
As far as cutting a patch to get to 7.5mcg, all the guidance I’ve seen says not to because that might result in all of the medication being released immediately. I cut a patch in half and it seemed to work okay, but in your case, I don’t think I’d risk it.
So if you have enough pills to last you until you can get a 7.5mcg patch, I’d suggest taking the patch off immediately and just use two pills at night. When you restart the patch, you will have to supplement with at least one pill the first night because of the slow ramp up in the patch’s effectiveness (the result of only releasing 7.5 mcg per hour so that it’s not til at least the 24 hour mark when you have enough built up in your system). With all the extra buprenorphine in your system now, it will take a couple days to stabilize on the two pills. I might try just one the first night and add the second only if needed.
Thank you again for your support and I suspect a very important factor in my attempts to stabilise my long term meds plan.
I will tonight take off the 15mcg/hour patch and take a 200mcg tablet at bedtime.
I wonder if I might ask another question and that is why the side effects (ie nausea & anxiety) only occur when I go to bed and despite sleeping in an "angled" position (ie three pillows). When I go to bed I have no nausea and only little anxiety but after being woken and a visit to the bathroom (probably after a couple of hours sleep) I get back into bed and the nausea starts.? I cannot understand this or am I missing something obvious?
Joolsg has suggested increasing my pregabalin a little to combat anxiety and I will do this tonight as well
I can't answer your question about the side effects only showing up later. I would guess that maybe it takes a few hours after taking the pill for the side effects to manifest? Is it different for you when you are on the patch and don't take any pills? If it's the same phenomenon of only showing up after your first couple hours of sleep, that would shoot down this theory, given that there is a constant release of medicine with the patch. Have you tried eating a little something when you are nauseous? Maybe the medication affects you more when your stomach is empty?
Of course it is early days but by following your a advice i had a really good night. As i already said i removed the 15mcg/hr patch at about 8pm and then at 11pm took a 200mcg tablet and an extra 25mg pregabalin. When the bathroom called at 2am I decided to eat a little (prunes actually -good for the other side effect of course constipation) and then low and behold I went back to sleep and did not have any nausea or sweats!
I will be contacting my GP today to ask for 7-5mcg patches but cannot decide what to do in the interim. I think my options are:-
a) repeat tonight ie one 200mcg tablet only
b) put on a 10mcg/hr patch (smallest I have) now or later in the day
c) Take a chance on cutting a 10mcg patch ( i noted your comment against this)
What do you think?
I believe we are learning from these expediences and I will put out a general post further down the track.
Great news! If you have enough pills, I'd stick with those until you get the new patches. Take one again, but be prepared to add a second if needed. You still had extra in your system, so getting by with one pill may have been a one-off. When you get the new patches, depending on the time of day you apply the new one, be prepared to need one or two pills that first night. If you don't have enough pills, you might try cutting the 10mcg patch down to 3/4. Even with only a day off the patch, it will still take some time for the new patch to kick in, so you may need pill(s) tonight. I'm going to make a new post with a table I found showing patch effectiveness by day, so look for that.
I have enough pills to see me through. I will keep you updated of any changes but in the meantime thanks again your support and I will look out for the table you are intending to post as it sounds both interesting and useful.
In my case I worked wrongly on the basis that when one puts a new patch on it doesn't start to put anything into the plasma for 12-24 hours but actually what I should have understood by this statement made on this forum was that it starts immediately but or course only at at 15mcg/hour and that takes a few hours to build up to a level "blocking" RSL. Hence i was overlapping patches. I also misread the signs when after 3/4 days I got what I thought were indications that the patch had finished but actually they were signs that I had overloaded my system and not opioid withdrawal symptoms
Good morning but for me a disappointingly poor night which I do not understaand and would appreciate your comments on please:-
I went to bed at 11pm after taking as discussed 1x 200mcg tablet buprenorphine. I was awoken at about 1-30 pm with not RLS but nausea. I was not as severe as before but prevented sleep for next few hours despite taking a small snack.
I don't think it was a RLS symptom and so resisted taking another tablet. I fell asleep about 4-30am and when I got up at 7-30am it had dissipated?
Of course I am sad because I though we had solved the nausea problem?
Sorry if I am getting all my different posts and replies mixed up but after last night's unexpected nausea scenario I need to get my head around where I am up to. Currently (11am on Tuesday 12th) i am experiencing a lot of hot/cold sweats and I suspect that as I do now NOT have a patch in place and my last tablet (200mcg) was 11pm last night that the buprenorphine level in my system has dropped significantly and I am getting some withdrawal symptoms (but no RLS)? I am thinking about taking another tablet but will hold off for a couple of hours to see what happens.
Could it be that there was still some buprenorphine left in my system and the tablet boosted it for a few hours ? That didn't happen on the previous night though?
Davchar, I get the impression you are tweaking too much with the aim to handle mainly your nausea in the night. Both buprenorphine pills and patches seem to work well for your RLS. But with both, you are stuck with this middle-of-the-night nausea. You wrote earlier that your doctor gave you Zofran? Have you tried? For several consecutive days? While keeping your buprenorphine dose stable as well?
With the the daily changes in what you you take (or apply) you don’t give things time to settle. I know you have had this nausea problem for quite a while. If you still think it is a side effect if the buprenorphine, and the Zofran didn’t help, have you considered talking with your doctor again and maybe try to find out whether it is the buprenorphine by temporarily stopping it? Preferably while taking another medicine temporarily that will cover your RLS symptoms. It may not be the buprenorphine and if so, your doctor will have to consider other causes.
Thanks for your comments which are much appreciated. I know what you are saying about the various changes I have been making but some of the research that 707 Twitcher has been doing certainly indicate and support the fact that I had used too much buprenorphine by assuming that the patches were exhausted when they weren't (ie after 4/5 days), leaving the old patch on whilst thinking that the new patch didn't start to work for 12-24hours, and using a 200mcg tablet to cover the interim period. I don't think there is any doubt that the use of opioid are the cause of my nausea as my GP and cardiologist have already investigated this and it goes right back to when the GP was prescribing simple co-codamol for RLS relief for me. This drub also caused nausea but didn't give any RLS relief
I am waiting to collect the Zofran but I must admit to being reluctant to take it as GP and Joolsg both warned it would make my anxiety/depression much worse and that is something I do not need right now! I will however probably give it a few days trial when I get it if I cannot settle the nausea on the lower dose patch (ie 7-5mch/hr) I seem to remember you only use a low dose patch and it lasts 6/7 days?
The alternative seems to be the Joolsg solution ie cannabis which my GP would frown upon and I am reluctant to antagonise him as he has been quite receptive to all the research and changes I have done. In fact I would suspect he has bent the rules quite a bit for me!
I am going to continue with a single tablet at bedtime until i get my 7.5 mcg/hr patches and then go with the lower dose.
Good to hear. I agree with twitcher about the too high dosing of patch and supplementing with pills. Always good to find the lowest effective dose. And only supplement if RLS symptoms break through and cannot be walked off in say 30-45 min. I hope the Zofran works without adding other issues. 🤞🏻
I think your approach is good, with one modification - I'm puzzled by your lack of RLS symptoms during this ordeal? I might try taking no pills tonights to see what happens, You can always take one if you wake up with RLS symptoms - it should take effect in 30-60 minutes. If you need to take a pill, then stick with 200mcg pills for a while. If your RLS is okay with this, then you will only need the 5mcg patch, not 7.5. If your RLS acts up on 200 mcg, then take another pill. If 400mcg is the appropriate pill dosage (give that a few days at least), then stick with the plan for 7.5mcg patches.
I really don't think you are experience buprenorphine withdrawal symptoms. From everything I've read, that seems unlikely. I wish I were a chemist and understood better the pharmacokinetics of buprenorphine. It's quite confusing. On one hand, Bup has a long half life (over 30 hours). On the other hand, most of its effectiveness (the analgesia effect) is gone by 10-12 hours. My operating guess, in the absence of anyone enlightening me further, is that the "effective half life" of Bup is much shorter (5-6 hours?), but the longer "elimination" half life means that some of the side effects may linger longer. If the long 30 hour + half life applies to side effects, one ultimately winds up with roughly 3 times the amount of Bup in one's system taking 400mcg in sublingual form daily compared with using a 7.5mcg patch. That is why, I believe, the patch is better for some people bothered by Bup side effects.
As always thank you for your prompt response and support I am a retired simple Chemical engineer so no chance for me to understand the organic chemistry side!
I will give that a go tonight and let you know what happens.
In your research what classes as short term opioid withdrawal if it isn't syptoms such as hot/cold sweats and perhaps a milder type of nausea?
I read your post with attached tables etc. Well done as all good supporting data.
All the research about withdrawal seems to deal with long term use at much higher doses. I agree - your symptoms sound like it could be withdrawal, but given the short period of time you’ve been on buprenorphine and the fairly low dose, it just seems unlikely to me. But anything is possible…
If you take nothing tonight and the symptoms persist or worsen, then maybe it is withdrawal? We know you were taking too much before. We know you experience nausea as a side effect of the Bup. One would think that if your nausea is from withdrawal, you should have felt better for at least 6-12 hours after taking the pill last night, and that wasn’t the case. That’s why it doesn’t sound like withdrawal to me.
I do know that the long half life means it takes a week or so at a consistent dosage for things to stabilize.
Sorry you have to make a guinea pig out of yourself, having to experiment like this.
taking Zofran might be a short term need. Once you get the appropriate dose for the patch, side effects should be reduced from what they are on the pill.
Thanks your analysis and logic. My GP just rung me and told me that 7.5 mcg/hr patches not available in UK so he has prescribed some 5mcg/hr.
I think based on your research on buprenorphine half life etc that I am still suffering from the effects of the significant overload resulting from at one day having two 15mcg/hr patches in place and topping up with a 200mcg tablets. by my calculations that is of the order of 920mcg in a day or 0.92mg and more than double the original dose of 2x200mcg tablets (ie 0.4mg) Not wonder I did not have any RLS symptoms ?
I am happy to act as guinea pig tonight and not take anything until RSL comes back
Thanks agaIn fior your patience and support. It is really comforting and enables me to work sensibly with my GP whom I think is learning fast on RLS!
Good luck! The 5mcg patch should approximate 300mcg of sublingual - so 1 1/2 pills. Top it off with your pills (maybe 1/2 at a time) if needed for RLS symptoms (especially the first night). Change at the 5 day mark to start with (no overlap). If that doesn't work well for you as far as RLS symptoms go (give it a couple weeks), then go to the 10mcg patch. I think that would be better than needing to take even half a pill nightly along with your 5mcg patch.
As you are in the US I thought you might still be online and if so I feel you wouldn't mid me asking for more support again.
As discussed I did not use any buprenorphine before going to bed a hour ago. Within minutes of laying down my nausea restarted and I have had to get up get a snack and walk around. I have not knowingly had any symptoms of RLS.
I removed the 15mcg/hr patch late on Sunday evening ie about 48hours ago and since then have only use one 200mcg patch on Sunday evening and the same on Monday evening.
The only other change i have made in the last two days s to stop my daily intake of iron bisclycinate which i was using to up my low ferritin.I thought this might be causing some nausea problems despite having taken it for 2 or 3 months
I know you didn't think it was withdrawal but i cannot not work it out? There must still be enough buprenorphine in my system to prevent RLS
No problem. I feel bad that I’m as much in the dark as you are about this. It’s frustrating not to have much medical help that understands RLS and all the medications, complications, etc.
If you don’t think the nausea could get much worse, I guess you could take a couple pills now and see what happens. If it’s no different then that should at least rule out withdrawal as the issue. Unfortunately that would delay getting the buprenorphine out of your system and hopefully the side effects along with it. I wonder if the iron has helped you to the point where your RLS has abated?
Maybe there is something else going on besides the buprenorphine that is causing your nausea? I’d ask your doctor, especially if you’re still suffering Wednesday and haven’t had any buprenorphine since Monday evening.
Rls returned about shortly after my last reply. I took a 200mcg tablet and about hour or so later the Rls and nausea had diminished and I got to sleep. I suppose in a way that proves the theory. I will continue with 200mcg until i get the 5mcg/hr patches and then try to stabilise the situation.
I got your second message about alternative contact method but i am sorry i do not understand the way it works. I clicked on "do you want to read this message-yes" and it asked me to send you a message.
So are you thinking you were suffering withdrawal? That’s the only thing that would explain the nausea abating after taking a pill. The RLS returning indicates that you still need the buprenorphine to control it, presumably. Did one pill handle the RLS completely? If so, the 5mcg patch should be fine without needing to supplement it with more pills (after the first night).
I guess this shows that stopping buprenorphine would require a slow taper, just like pramipexole, even after only being on it a couple months.
I cannot see any other answer. I went to bed with no buprenorphine taken, no RLS or nausea but immediately got nausea and after a couple of hours RLS returned in both arms and legs. I took one 2oomcg and within an hour i sleep well. Slowly during this morning the nausea has returned presumably as the effect of the one 200mcg tablet wore off (ie it is now nearly12 hours since taking the tablet. I think that matches what your recent post showed.
I haven't got the 5mcg patches yet but I suppose I could take half a tablet but I am a bit reluctant to try it during the day?
You have adjusted meds frequently lately. Can you summarize briefly your recent history with pramipexole (how much you were taking, how long you took to taper off, when those milestones were), pregabalin (dose taken over what periods of time; any difference in the level of side effects as you ramped up then down), and buprenorphine (dosage and dates used for patch and pills). Maybe laying out your recent history will highlight some clues about what is going on.
It would be great if you could find a knowledgeable doctor to work with. It’s probably difficult to distinguish which of your side effects are due to DA withdrawal (which can last for a long time), buprenorphine and withdrawal from it, and pregabalin and withdrawal from it.
If you can’t find a doctor who specializes in this, then I think you will need to slow down and try to deal with fewer variables. When your 5mcg patches come, stick with that, changing every five days. Only supplement with pills if your RLS acts up, half a pill at a time. Hold the pregabalin constant at your current dose. (Given your difficulty with buprenorphine, I think you’d be wise to try it or gabapentin more fully - but only after things settle down. ). And talk with your doctor about the nausea and what he thinks the cause is. I’m still skeptical about it being buprenorphine withdrawal, even with your experience last night. If it is partly buprenorphine withdrawal, I would think it will settle quickly as you stabilize on 200 mcg pill, then the 5mcg patch. I believe the patch should ultimately cause lighter side effects than the pills, so switching back to it seems appropriate.
While it seems that you don’t need much buprenorphine for your RLS, maybe it has been helping with DAWS as well as pregabalin tapering. If that’s the case, then taking a pill every 12 hours might be useful until you have had a patch on for a day or so.
In recent years i have been through what i suspect is most RLS sufferer's scenario is with meds.
In my earlier years of RLS various GPs prescribed a range of DAs icludidng pramipexole (low dose only) but finally having augmented on rotigotine (gradually up to 4mg patches) I was referred to a neurologist who prescribed pregabalin and over quite a long period got up to 600mg per day without any success against RLS.
The consultant neurologist then recommended oxycodone/naloxone (various does up to 30mg/day when this was unsuccessful he proposed low dose opioid and I started on 10mcg/hr buprenorphine patches early in December 2023 (ie nearly 4 months ago). I found I though I needed 2x10mcg patches to control my RLS but in retrospect I i am sure if i had given the 10gcg patches time to settle down and I commented on the difficulty of knowing how long the patches lasted to GP and he agreed to let me try 15mcg patches that I was overlapping as well. Because of this the GP agreed to use tablet (2x200mcg) per night but the nausea gor very bad and switched back to tablets.
I first had the nausea when over a year ago one GP prosed high strength co-codamol tablets. My cardiologist was concerning about the nausea and even checked out it out with ultrasound scan and various tests but the end result was confirmed by my last GP as being caused by the co-codamol (opioid?). i stopped the co-codamol and nausea stopped.
As almost expected the nausea came back as soon as i changed from oxycodone to buprenorphine..
So it seems we are looking at nausea caused either by use of opioid and/ortoo rapid withdrawal from it.
When i think carefully about it whilst i describe both cases as nausea there is something different now and that is it exists in daytime as well as night. The original "nausea" was something that came on about 4 or 5am in the morning and made me take deep breathes to remove it. Currently i feel sick.
Sorry i know that is not a clear enough picture to determine a pathway to steady meds but is the best i can relate to you.
Hopefully I will have the 5mcg patch tomorrow and will continue with that and 50mg of pregabalin. I decidde to up the pregabalin dose based on Joolsg comments that it helps with the anxiety factor and your comment
Sounds like the nausea is unrelated to DA withdrawal or pregabalin use/tapering down. Did you try another pill today? Maybe take 200mcg every 12 hours until the patch has kicked in (24 hours or so).
Sounds like your short-term plan should be: stabilize buprenorphine usage (hopefully the 5mcg patch keeps your RLS at bay; if you need an extra pill or half pill occasionally, go ahead; if you need it more often, then you likely need 10mcg in the patch); and try Zofran for the nausea (hopefully the need for this lessens as you stabilize the buprenorphine usage).
Longer term, after things settle, it seems like two things to consider would be:
1. Since your dopamine recptors have had a chance to heal more after being off the DAs for a while (how long has it been?), give pregabalin or gabapentin another try to see if that can enable you to drop the opioids. The two drugs are interchangeable, so I'd be inclined to try the gabapentin since your pregabalin experience wasn't good. Sue and others have lots of advice about a regime to ramp up on either of these over time.
2. If the nausea doesn't abate and the gabas don't work for you, swap methadone for buprenorphine. That is the other opioid that is recommended for RLS, and side effects might be different for you. But, obviously, work with your doctor on this to make sure you're a candidate for it, and to handle any tapering involved with a switch.
My last DA was September 2023 (ie 6 months) so i am hoping to find a way back if receptors are at least partly healed and your plan looks logical.
I did not take another pill today and nausea cleared by dinner time. I will try another 200 mcg tablet in an hour or so and see how things are overnight and tomorrow.
I took one 200mcg at about 10pm and went to bed at 11-pm. My nausea started very soon after laying down and then soon after I needed another 200mcg tablet for RLS.
As soon as I get up the severe nausea turns to just an uncomfortable feeling in stomach region
Should be able to get the prescribed 5mg patches and Zofran today
New guidelines study does not say much on buprenorphine
I don't know about the sleep team at Guy's. Sounds a good thing but my GP in the UK has no problem prescribing buprenorphine.I take the tablets and so far the low dose is brilliant.
Morning davchar23, I am on 900mg of gabapentin plus buprenorphine sublingual SF 200mcg tablets.That has worked for me for 8 blissful months, although Sue & Joolsg will probably say I need to lower my gabapentin dosage?
I wouldn't say you need to lower the gabapentin. Dr Buchfuhrer always says that 2 medications at low dose often work better than one med at a higher dose. If it ain't broke....So enjoy the blissful sleep. The gabapentin probably counters any opioid wakefulness/alerting/anxiety and helps with sleep.
Thanks Joolsg. Interesting to hear Dr Buchfuhrer's comment.As mentioned before I do wake twice every night & have a wander, so I never ever sleep for more that 3 hrs bites but honestly it is a very small price to pay, when the alternative was night and night of pure hell.
I absolutely agree. Is the waking due to RLS? I only ask because I wake twice a night, but that's my MS bladder, and I have zero RLS. If you are being wakened by RLS twice a night, an increase in Buprenorphine to 0.4mg would probably resolve it. And 0.4mg is still a very low dose.
On 0.2mg, I would get RLS around 3 am. Increasing to 0.4mg stopped it. But I take 0.2mg at 9 pm and 0.2mg just as I'm falling asleep.
Ditto Joolzg and Simkin. I’m on Buprenorphine sublingual at 0.8 for PLMD, not RLS and thus far I’ve been free of PLMs for a year. My prescription is ratified by Dr. Mike Davies of the Royal Papworth sleep clinic in Cambridge.
Having benefitted for RLS from good advice from several on this forum (eg Joolsg, Lottem and others) I am replying to give you my experience.
In my opinion there is no doubt that Rotigotine patches cause augmentation. I found that out from personal experience .
I have tried both Buprenorphine patches (@15mcg/hr) and tablets (0.4mg/day). Both gave me RLS relief (ie blocked RLS night & day) but both caused severe nausea and resulted in a problematical sleep pattern.#
I found it very difficult to gauge when a patch was going to run out as the period of relief seemed to vary
My GP has now prescribed a trial of Zofran to try ease the nausea.
Here's my buprenorphine experience in case it helps:
I started on suboxone strips (2mg buprenorphine), and cut them into various fractions as I experimented for the first month or so. I think it takes a month for your body to adjust to it, as far as getting the dosage right. I went through an initial period where 1/4 of a strip (.5mg) actually lasted me for two days. I attribute that to its long half-life (I have seen numbers as high as 37 hours for the half-life). So, davchar23, it's not that a pill releases a lot of medicine the first 8 hours, then less over 16 hours. The medicine is all released immediately. It reaches peak effectiveness quickly, and it takes a long time to leave your system. I ultimately stabilized on 1/6 of a strip (.33mg) nightly.
It worked from day one as far as stopping the RLS. If I had RLS symptoms (becauseI didn't take enough), it's easy to remedy that with a little more - it acts within 30-60 minutes for me. The only side effect I experienced that didn't ease after a month was constipation.
Because of that, I switched to the patch a month ago. My GP started me on 5mcg patch, but I quickly discovered I needed 7.5mcg to be as effective as my .33mg sublingual strip. Because it releases such a small dose every hour, it takes a full two days before it's really operating at full effectiveness. That's why it's a problem when a patch loses effectiveness before you replace it - it takes a while for the new one to kick in. If the patch loses effectiveness after 6 1/2 days and you don't add the new one till the 7 day mark, you will have had a 12 hour period with nothing. You may not notice that right away (that long half-life effect), and wonder why your symptoms act up even though you already put the new patch on. So far, I've found that I need to switch every 6 1/2 days. I still have a supply of suboxone strips, so I haven't been afraid to experiment to see how long the patches last. Having that "backstop" of immediate relief from the strip is helpful. The patch seems to be much better for the constipation.
I never had nausea, but my dose is fairly low, so that could be why.
So I would encourage anyone just starting buprenorphine to use the pill or subingual strip so you can start with a lower dose and "top off" if you need a little more. Especially during the period of adjustment for that first month. davchar23, see my comments above regarding your situation (edited)
hi sheelagh, I thought I would update everyone with my story and buprenorphine and the long battle to get it.
I had severe RLS all the time and considered suicide , I went to a private consultant after having no success with my GP helping me and he prescribed the rotigotine patches . They helped for around a month (was begging for buprenorphine and he advised targinact) went to my GP who wasn’t allowed to prescribe even though the consultant asked for it)! They eventually caved in to oxycodone which helped a bit but very low dose. They wouldn’t up it and labelled me as a drug seeker . Anyway I ended up having to take more of the oxycodone and too up when I ran out with kratom. Fast forward 10 months and I was suicidal again. The consultant in london would only see me if I paid 260 quid each time and I ended up in a psychiatric hospital for a month they detoxed me off the kratom and oxycodone and put me on espranor (which is buprenorphine for opposite addicts dissolved on the tongue ) . Luckily I had a very kind psychiatrist who specialised in substance misuse also and since being out on buprenorphine not had any RLS at all. I don’t want to come off it- so have to be under the drug service and see them every 6 weeks, but that is a small price to pay xx
Your story is absolutely horrific Lola.If you had been given Buprenorphine when you asked for it, you would not have gone through all that suffering.
I'm just appalled at the lack of knowledge and poor treatment .
The last post of yours I read, you were throwing away the kratom. I can only imagine that you were so desperate that you started using it again and ended up addicted to it. Sadly, that happens often. Kratom loses effectiveness and people have to take higher and higher doses to achieve the same effect.
I do hope you are in a good place now, and perhaps feel strong enough to consult a lawyer? Legal action seems to be the ONLY way to make the UK medical Profession listen to us. Money talks. Suffering doesn't count!
Hi Joolsg , Thank you for your reply. Yes you are absolutely correct, If they had given me buprenorphine like I had asked for (including taking all the clinical studies with me to show them) ,this would never had happened. I became so miserable that I just did not see any point in going on. My mental health deteriorated so much that I was taking double the oxycodone, then taking a teaspoon of kratom x 4 a day, plus by then I was also drinking myself in to oblivion with Gin. I just wanted the RLS to stop and felt so awful each time I went to the GP because they were labelling me as drug seeker and point blank refused to help me anymore. I then decided to call my employment health care insurance and after speaking to lots of mental health professionals, got an appointment with a psychiatrist at the priory hospital. He was so kind and understanding and he got me in the very next day (4 days before Xmas) I stayed there for a month , the detox was horrific. It was the worst thing I have every gone through- it was very in dignifying, as I was vomiting and wetting myself, I could not stay still for 72 hours . The staff there were amazing and as soon as I had that very first buprenorphine tablet under the tongue, it disappeared completely. Complete relief. It only took one x 2 mg tablet to take it all away. I was then stabilized on a higher dose and I was able to take part in intensive therapy all day every day . I am now a different person with no RLS and I dont have to go begging for medication to make the RLS stop. I have been told that I will have to start weaning off the buprenorphine, but under the clinical guidelines- I cant stay on it for as long as I want. Therefore even though I will spend the rest of my life under the community drugs team - I really do not care. The RLS is gone and that is all I care about. There have been some drawbacks, where I have to collect my medication once a week from a pharmacy (which again is a very small price to pay and I am happy with that). The stigma attached to being labelled an addict and having to go to NA meetings, I have also had to notify the DVLA that I was dependent on opioids and am now diagnosed as having a history of substance misuse disorder, that will most probably impact any future employment and pain relief options if I was ever in acute pain for some reason. I have just this weekend had a letter from the DVLA to notify me that I have to return my driving license until a year has passed and if I can provide proof of engaging with drug teams and a year of negative urine drug screens. Its a good job that I work from home, otherwise I would have lost my job also. Joolsg, do you think I can contact a no win no fee solicitor? NICE guidelines for RLS needs ripping up and throwing in the bin. I mean how many people actually do commit suicide because of this horrendous neurological didorder? Or end up like me who get so desperate?
Definitely contact a solicitor. Switalskis legal firm made a post recently. They'll discuss your options.I don't understand why your current doctors are trying to make you come off Buprenorphine. Many of us take it for our severe RLS. It works. We need medication for life for RLS. It doesn't just 'disappear'.
Here's a link to Switalskis and to the Buprenorphine study.
And Lola,Did any doctor ever do the full iron panel blood tests for you? Failure to take those blood tests is a breach of duty and Switalskis solicitors have already exp the opinion that it's negligence and we can bring a legal action. The NICE and NHS guidance both require blood tests and a review of any meds that trigger RLS.
I seem to recall you saying your son also has RLS.
Raising brain iron by iron pills/infusions can dramatically improve the majority of RLS cases. Your serum ferritin should be above 200ųg/L ideally.
I’m on 1/4 of a 2 mg tablet. It works really great! So happy it exists. I’ve tried everything the last 25 yrs. This is the only thing that really works.
I am fortunate to have the pill form, which I take at night. I cut the 2 mg into 1/4, but without that tiny bit, I would get no sleep!!!! I tried to do without and it was a nightmare. My doctor prescribed more, but I itch horribly, which is why I went down to the lowest possible amount that would work. Good luck!
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