I have a long awaited appointment at The Barberry Centre in Birmingham where I hope to persuade the consultant I see to prescribe buprenorphine. If he agrees what form is best … sub lingual, tablets, and what dose?? Temgesic? The other issue is - what if my GP says that she is still unable to prescribe it under current guidelines - Will I have wasted the appointment?
I look forward to receiving your comments.
I take Buprenorphine sub-lingual tablets. My gp would not prescribe the drug in this form without a Neurologist to ok this first. He did prescribe the patches but I did not get on with them.
I can only speak from personal experience. I take O.4mg of generic Buprenorphine. I find the Accord brand works best. The Sandoz & Morningside always cause breakthrough RLS in the late evening.I take 0.2mg at 9 and 0.2mg at midnight and have zero RLS.
It did cause overwhelming nausea & vomiting the first 10 days, but I had medical cannabis and used that for a week and it stopped the nausea. I then developed opioid panic attacks so added 25mg pregabalin at night. That totally stopped the panic/anxiety.
There are others taking the Buprenorphine skin patch but the drawback seems to be it doesn't last for the full 5 or 7 days and breakthrough RLS occurs.
If Buprenorphine is on a 'red list' where you live, a specialist has to prescribe it and is responsible for the ongoing prescriptions. So first, find out if you live in an area where it's on the 'red list'. If you are, ask the Barberry how you will get continuing prescriptions.
Thank you Jools! I have seen my GP today to update her about the appointment. She confirms that buprenorphine is still on red list and that the consultant will need to make continuous prescriptions. To clarify - are you taking 0.2mg of Accord sublingual tablet at 9.00pm and another identical dose at midnight?
Yes. I use a pill cutter to halve the 0.4mg Accord Buprenorphine pill. I've had zero RLS since June 2021 when my GP prescribed it on a 3 week trial. Im lucky that my area does not have it on 'red list'. If it changes, I'll sell up and move to an area where it can be prescribed by a GP.
I too am on a regular dosage of Buprenorphine sublingual tablets, in my case 0.6 in the form of 2 tablets - 0.2 and 0.4 - taken together an hour before intended sleep. I tried the patch, but experienced exactly what Joolzg described. Getting the patches was a struggle. But when they failed (as Joolzg describes) I had a battle royal on my hands!
However, since the GP reluctance arises from a fear of litigation in the event of ‘something going wrong’ (presumably recalcitrant addiction to the medication, even at the minute levels used in Buprenorphine prescription for RLS/PLMD!), if a senior practitioner steps in and ratifies both the med and the dosage parameters recommended by the MayoClinic guidelines, there should be no further resistance to its prescription. I used my sleep clinic doctor who kindly and professionally obliged, both with my initial request and subsequent titration issues. Make sure that your consultant has a copy of both the MayoClinic recommendations and the Manhattan General Hospital’s findings on opioid prescription for RLS, links to both of which are available via this social media site. Read them first then email them to the consultant. Good luck, Flora-Rose!
Thank you Dick! I have seen my GP today and she supports my visit to the sleep clinic but feels unable to over rule the ‘red list’ guidelines for buprenorphine. I will email the consultant with supporting documentation and evidence and take copies with me to the appointment. How long have you been taking buprenorphine and how is your RLS now?
I wish you well of the consultant. Hopefully they can provide enough reassurance to your less-than-helpful GP to provide a prescription for low dose Buprenorphine.
I’ve been on the sublingual tablets since early spring. I don’t have RLS, I have PLMD and the Bup has suppressed the PLMs ever since I went on to my current dosage of 0.6 mg. Could last for a long time, could fold tonight. One night at a time! Good luck…
Hello again
I am doing my research and can’t find the Manhattan GH information. Could you help with link or search details please?
Dick meant Massachusetts GH. This is the reference from RLS UK website:
"REFRACTORY RLS
Where first line treatments have failed due to adverse effects or augmentation, low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored. The Massachusetts General Hospital Opioid Study shows that long term, low dose opioids used in RLS do not lead to an increase in dose over long periods of time. (National RLS Opioid Registry (massgeneral.org/rls-registry). Opioids should not be withheld due to fear of tolerance or dependence as they can result in complete resolution of refractory RLS and improved quality of life.
in the UK, Oxycodone is licensed for RLS, but codeine, tramadol and buprenorphine can be prescribed off licence. Most general Practitioners may be reluctant to prescribe opioids without the supervision of a neurologist.
Tramadol is the only opioid that can cause augmentation and worsening of symptoms should be monitored.
Common side effects of nausea, skin itching, sweating and anxiety should be monitored and treated accordingly."
Got it, thanks!
Please do let us know how you get on. I am seeing Prof Walker in London for exactly the same thing. It would be good to compare notes. Many thanks!
My appointment is on July 26th. At present I am preparing my case in the likely event that the consultant is not ‘up to speed’ with the latest research into RLS. I hope I’m wrong. I will be very interested to know how you get on with Professor Walker.
Buprenorphine 2 mg sublingual also know as Subutex NOT SUBOXONE which has NALOXONE added.
I have been taking Subutex /Buprenorphine 2 mg very successfully for nearly 4 years ,
Buprenorphine
One dose nightly
Zero breakthrough
No dose creepage.
If you are successful please read through my notes on how to start taking. Buprenorphine , do not take the whole dose on the first night.
Temgesic
Mcg - micro dose half-life 5 hours too short
Requires multiple doses per day up-to 10 depending on the severity of RLS
Very acidic , frothy ,rots teeth
Temgesic mcg is adequate for some
BUPRENORPHINE/SUBUTEX mg is GOLD standard
Please let me know if you are successful I live in Australia however my son is in Bromsgrove not far from Birmingham and he is suffering badly and we are just about to start trying to find treatment for him . Doctor don’t believe he has RLS because it’s in his arm and the pain he suffers in his arms and legs is cruel..
Wishing you success
I’m sorry to hear about your son, Shumba. Let’s hope the Barberry comes up trumps!
Barberry is a psychiatric unit so I don’t know why you expect them to prescribe an opioid? I doubt they know much about neurology there. Neuropsychiatrists can be very ignorant and focused only on the mental side of things. They might well say it’s all in your head. I went to see a neurologist about RLS and he wanted to send me to Barberry because the idiot thought I have functional neurological disorder. He didn’t know cr@p about RLS and I doubt anyone at Barberry does, either.
I have appointment at the Barberry because I read a post on this forum from someone who had been prescribed buprenorphine for RLS by a consultant at the Barberry Centre.
Ok, that surprises me a lot. I hope you get some understanding from them. xx
Appointment today update 
Priorities at first appointment 
Neurologist
In UK have been sent an appointment to epilepsy clinic?
