Hello,
my doctor and myself are playing around with buprenorphine dosage for RLS.
I know Jools only takes 2 mg even less at times, I know Shumbah takes 2 mg and gets 24 hour coverage.
i was wondering what other doses were if anyone takes more than 2mg just trying to get an idea
thanks,
Joolsg takes 0.4mg as do 3-5 more.
I have a 7d patch of 5mcg/h, as do 1-2 more.
Several others (at least two) have patches of 15mcg/h.
I have quite a few more doses as I kept a list for a while. But it may well be no longer up to date. I think updated guidelines in Mayo Clinic Proceedings say average is 0.6mg. But doses vary, which is also apparent from my list. Few take higher than 2mg.
As always, I would say start low, get some leeway from your doctor and see how it goes. Sublingual tablets (0.2 or 0.4mg, can be halved) work rather fast. In a hour or so.
Be aware of potential nausea, that is the most often mentioned side effect.
I’m aware of it all I have taken it before but 2 mg barely does enough he wants me to try 4 mg through out the day. I like this better beucause side effects aren’t as bad as methadone
Also I could be wrong I think the Mayo Clinic outline says 6mg is usually the highest.
I don't know about the highest, I thought 0.6 mg is the average. I just checked. It says usual effective dose 0.5-6mg. Indeed.
As ever, it seems s between you and your doctor to decide in what works for you. If you handle the 4mg well, why not? Personally I would like to increase in smaller steps to find my lowest effective dose. But that is also because I do not tolerate well higher doses so f medicines.
Hope it works for you!
I don't take it but the usual effective dose for RLS is .5 to 6 mg.
I take 0.4mg, not 2mg.Average dose is 0.6mg.
Shumbah is on 2mg.
Start low. I started on 2mg and overdosed. Took 3 days to recover.
My dose is about 0.25 - 0.4mg. Just go easy to start.
You overdosed on 2 mg are u serious ? Were u taking anything else with it ?
I'm am totally serious. I didn't touch the stuff again for months because I was so ill. I didn't sleep for 2 nights, I couldn't breathe, my stomach was a mess, my whole body was itching, I thought I was going to have to call an ambulance. It was awful.
Like others on here, I now take a very small dose. My tablet is 2mg so I break it into about 8 crumbs, 0.25 is often all I need, never get up to 0.5mg.
Start slow, wait and then titrate if needed, but wait first. It melts in your mouth, you leave it there for a few minutes, then it can take a bit of time to work.
I get wakefulness with any opiates, and I have found I can tolerate 0.5mg of Loratadine, which is an antihistamine, if I get wakefulness. It is listed as a safe antihistamine with the RLS Foundation and used with Buprenorphine it doesn't trigger my RLS. Perhaps the latter overrides any symptoms. But it allows me to sleep.
Opiates are a histamine releaser, and there is a link with histamine and RLS in some people. The Loratadine stops that for me, stops the itching the opiates cause, and the wakefulness. But everyone is different.
The itching kills me and unfortunately my RLS is so severe 2 mg will barely touch the symptoms. I’m gonna try what u said for the itching, I feel I can take the Nauseau more than itching
It's worth a go. Buy a non brand one, one a day, they aren't expensive. And take at the same time. I did find that I got more used to the itching over time, however, I am taking Low Dose Naltrexone now which reduces histamine and can help RLS, so that might be helping. There's a link between mast cell issues and RLS in some, so the LDN definitely seems to be helping but you have to find a private prescriber to get it and it's not for everyone. The LDN has to be the right type, and be taken 5 hours or more away from any opiates. It's definitely helping my ME and autonomic issues. The clinic I use is Harpal Clinic, and I do it all remotely.
Good luck.
Does your lower dose control your RLS?
Sampsie I too seem to suffer from wakefulness from opiates, and I have never heard of taking an antihistamine to help with this problem. Does the loratidine work well for you? How did you learn this? How much sleep can you get using this strategy?
Hi, I too am affected by wakefulness from opiates. I have finally found that a small dose of gabapentin has resolved this.
I started with 100mg and even at that dose, I found an improvement. I've now stopped at 300mg and find that, apart from toilet breaks and the cat wanting to have breakfast (at 4 am, which I don't allow!), my depth of sleep has improved immensely. I even started to dream again, something I hadn't done for over 2 years. I was so sleep deprived I was falling asleep whilst talking on the phone (and it was me doing the talking!) and while typing on the computer at work!
I was so thankful to find something that helped. I did try antihistamines as I have allergy problems anyway, and it didn't help at all.
I'm finding that with the buprenorphine + gabapentin, I've had the best coverage for my RLS that I've ever had and I've even been able to drop a lot of the tramadol I take for pain. Good luck finding some deep sleep.
I take between 0.4mgs to 0.6mgs. I only take the 0.6mgs if I have symptoms in the evening.
I'm on 15mg for PLMD plus 1800 mgs of Gabapentin (largely inactive now) and I'm still getting 2+ strong protracted PLM sequences a night. However, so far the 15 is providing me with some decent REM sleeps in between the marching up and down. It's not perfect, but I'm very conscious of those RLS sufferers whose condition has them strung out night and day so somewhat tentatively I count my blessings.
Hi all! Just to point out that I don’t think you mean mg but mcg. 2 mgs would knock a horse out!Im on a strong dose of 35mcgs. However, this was prescribed for a combination of my Fybromygelia and lumbar pain from an old parachute injury, the great lessoning of my RLS was a bonus! I think Buprenorphine is a great alternative, without side effects, for the large amounts of morphine, Tramadol, co-comydol and Gabapentin I was on previously. Having a new pain consultant has turned my life around, I really can’t praise him and his team enough.
You are, of course, correct, my thanks. Old dosage designations die hard!
My doctor has me at 8 mg😑
I take 12 mg every evening. When my RLS spikes upward I get about 4 hours of coverage on that dose but when I'm on the low side for symptoms I can get up to 6 hours of relief. Oxycodone works better for me. I can get 8 hours of coverage with 60 mg per day.
I take 400 micrograms twice a day works for Rls but I'm in pain with other things like arthritis and knee pain from an old surgery that went wrong . I haven't got to ho to a pain clinic but would like to as nothing g seems to touch all the aches and pain s I have. Can't take ibuprofen as gives me really bad stomach . Then u end up taking g omeprazole to counter act it and its just more and more tablets
I can’t believe you take 0.4 mg total that’s so great that such a low dose works for you
Well it's 0.8mg I suppose cos it's twice a day . I had severe Rls I've taken all the usual drugs they give u I take cbd to but only recently . Do u think if I took more it would help with pain as they are used for pain . Doctors are so wary of it getting more would be difficult
Be aware that omeprazole can trigger RLS. I was on it for ages before I realised it was the culprit. When I finally realised and changed to a liquid product, my legs totally stopped the daytime symptoms and the 1 hour after going to bed symptoms that I'd had for months.
Restlessoz, does that mean that you no longer have RLS symptoms and can do without meds? I really hope so!
I wish it was Lotte! No, I still have symptoms and last night was a case in point. I was up twice for about an hour each time. Having not had any symptoms for weeks! The buprenorphine patches are my current treatment and I find them brilliant. With gabapentin (300mg) added to reduce the wakefulness, I'm very happy with how it's going. But I still think there are triggers in my diet, like currant buns. I bought a packet of six and ate them over six days and last night was the result- or that's what I hope because I won't have any more and so hopefully I will sleep better tonight.
When I was on the PPI I would take it at bedtime and then an hour later without fail I was up for an hour or two. I had added it about 18 months ago due to a stomach issue and hadn't even realised until I read some posts here. Without it, everything settled really quickly... until the current bun temptation. 
Hello RC723 - I am interested in this discussion regarding buprenorphine (temgesic) tablets. At present I am taking 0.6 mg (600 mcg) per day. Professor Walker put me on these tablets and is keeping an eye on dosage for me. I take 0.2 mg about 7.00 pm and 0.4 mg at 11.00 pm. I only sleep until approx 4 am - sometimes less. My problem is that when the 0.4 mg. nighttime dose wears off I suffer a marked drop in mood - feeling quite down the following morning. I seem to process this drug very quickly as others get a full night's sleep on even less than I take.
Does anyone else on here suffer this mood drop? and if so how do you deal with it. Also my RLS is now occurring anytime during the day and can go on for hours. Professor Walker has said I could take 0.2 mg. in the morning 0.2 mg in the evening and 0.4 mg before sleep - altogether 0.8 mg. I have not taken this much so far as I was trying to keep the dose as low as possible but I think I am going to have to try it. My GP is completely against it but because Professor Walker has recommended it my GP is complying.
I also notice from many of the replies that people are getting mixed up in the mcg and mg dosages and it is sometimes hard to follow from their replies exactly how much they are taking. Hope you get your dosage sorted - it seems to be quite difficult for some of us.
Hi, I’ve been wondering whether Bupophrenine would be an alternative for me so I’m concerned to hear about the drop in mood. Tramadol makes me feel very depressed. I also get severe stomach pains from both Tramadol and Co-Codamol. So far I haven’t tried anything else as I’m still waiting for some expert help. Do you or anyone else get severe stomach pains from Bupophrenine ?
I was first on buprenorphine patches which are supposed to last for seven days but rarely do. I used the 15 mcg strength. For a time these worked reasonably well for me but then lasted shorter and shorter time so that I was only getting about 3 days good coverage out of 7 and the patch started to really irritate my skin. I then changed to Temgesic (the tablet form) just a month or so ago and I am still trying to get a suitable dosage worked out. For me I was able to tolerate buprenorphine - no stomach cramps, but perhaps dryness of the mouth during the night which can be helped - but certainly I have suffered depression symptoms whilst on the patches. On the tablet form you take them in the evening when RLS kicks in and the second dose at bedtime. For many this works extremely well and they are very pleased with the outcome. For me I seem to process the dosage very quickly - it is supposed to last 6 - 8 hours with a long half life. It certainly does not last like that for me and the following day I can feel quite down. However, I have other major health issues and because I am immunosuppressed I cannot mix with other people. Buprenorphine in any form can cause constipation. I am not bothered by this as I eat fruit and vegetables.I hope this info helps. Good Luck
Thanks, I also have an underlying condition, hEDS, and don’t seem to tolerate anything really. Only hypnotics, but I get shamed for taking them and they no longer cut through the neurological issues. Meds usually work temporarily, then I get so many problems I have to stop. Don’t want to feel sicker than usual in the day time when things are already bad enough as it is. Am waiting to see a neurologist. I heard about Bupophrenine (from a Johns Hopkins web seminar) that the constipation is less bad than with most other opiates, don’t know if it’s true. I suffer from diarrhoea so constipation isn’t always a bad thing if that’s the only issue, but I seem to also get pain.
So sorry to hear of your other problems and I know exactly what you are saying about "shaming". hEDS is horrible for you and I know causes many problems. I have a rare blood cancer and so have to take oral chemotherapy daily. My GP does not like me being on opioids and in fact does not support me in any way. I also get my eyes injected every 12 weeks for wet macular degeneration, so lots going on. I am also very sensitive to medication and if there is a side effect I usually get it!!!! I do hope your neurologist will be able to help. Do let us know how you are faring.
Aw, thank you J! I can’t even begin to imagine what you must be going through! Chemo would be my worst nightmare. I suffered from medical negligence a few years ago and had to take tons of antibiotics and four major surgeries in one year, and I wonder how much it has contributed to my medicine intolerance. It certainly aggravated my tinnitus so I’m now 100% sound sensitive, and this is also relevant to the drugs I’m taking (or testing) as they now tend to aggravate it. Do hang in there. Thanks for the support, I will come and report about whether or not I’m finding a way of improving the RLS :).
No nausea but perhaps some itching. It is hard to say as I take other treatment which can also cause itching
The itching (pruritus) is strange. I get it every once in a while but I can’t figure out why. Last night I left out one of my sleep meds which is antihistaminic and it caused me to itch through the night. Sometimes I think the same medicine is causing it. I take l-histidine which is a precursor to histamine, and it helps me overall and even relieves some RLS. I’m completely confused.
Buprenorphine
Buprenorphine 
Buprenorphine
Started Buprenorphine 😴 
