Hello, have many UK people found it easy or hard to get Buprenorphine px by GP to control pain from RLS?
I have been withdrawing from Pramepexole and using only codeine however it is now not effective in controlling my pain. I have a GP appointment in a few days and was going to ask for Buprenorphine.
Also, should I ask for tablets or patches?
Thanks in advance.
Nicola
It very much depends on 2 things.1. Is Buprenorphine red listed in your prescribing area.
2. Is your GP surgery anti opioids?
I take Buprenorphine pills at night. I do well on 0.4mg, but need to increase it to 0.5/0.6 for different brands.
Pills usually work better because they release most of the active ingredients over the first 12 hours, so if you take around 9/10 at night, they cover all night.
The patches release an even amount over 24 hours and most people report that they stop working after 4 days. They're supposed to last 7. So you then get severe RLS for the next 3 days. Too many people report this for it to be dismissed.
Here is the research study from the USA.
Hopefully your GP will read it.
neurologyadvisor.com/report...
Hi i know Buprenorphine is red listed at my Gps so does this mean its a post code lottery which is crazy . I have found a private gp here who will.prescribe it but is waiting for me to see Neurologist first !! If I do succeed do I have to come off Gabapentin and Targinact straight away or wean off them both slowly?
Yes, the ridiculous UK postcode lottery.You can switch straight to Buprenorphine pills from Targinact as you're swapping from one opioid to another. BUT you must reduce gabapentin slowly to avoid withdrawal symptoms. Check with the private GP where you can fill the prescription because sometimes, local pharmacies will not fill a private prescription.
It is just outrageous that some patients can get Buprenorphine, but not others.
Agree, 100%.
So my neurologist prescribed 0.4 mgs sublingual Buprenorphine and from night 2 Im 100% rls free and its amazing BUT my Gp is refusing to prescribe it as its red listed and not generally used for Rls. My neurologist has told them they HAVE to !I have done some reading and I dont think they have to. So let the battle commence. I have 4 tablets left so getting very stressed. I have even looked into moving to another practice. Wish me luck , Im going to need it !
Definitely move to another practice. Pregabalin and gabapentin are not licensed for RLS, but I'll bet they prescribe that.The neurologist has directed them and is taking responsibility, so they cannot lose their licence.
It is MADNESS to deny you a treatment that is stopping the nightly torture of RLS and allowing you to function.
You should put this up.as a new post as others need to be aware that GP surgeries are refusing to accept a neurologist's recommendation.
Can the neurologist issue a prescription??
And also say which part of the UK you are in.
You need to find a GP surgery in an area within an hour's travel that WILL follow his instructions and where it's not red listed.
Will do but surely you have to be registered with a gp to get a prescription ?
Yes, but neurologists can issue a private prescription that you can take to a pharmacy that dispenses private prescriptions.And you can register at ANY GP surgery in the UK that will take new patients.
It may cause a problem if you need to see a GP face to face more than once a month. But otherwise, it's very doable.
If you can drive or get a train easily to the GP surgery, you can register there.
Do you work in another area? That also allows you to register at a GP surgery near your workplace.
Ah ok . I saw Dr Martin privately first and then on the Nhs when he prescribed Buprenorphine. Been doing some reading and it says the person who writes the script is responsible which is why my Gp wont issue it despite being told to by Dr Martin . So angry with the whole system . Happy to sign a disclaimer anyway at Gp's if need be .
derbyshirehealthcareft.nhs....
Yes, many local prescribing areas gave different rules. Buprenorphine is red listed in many areas and it means only the neurologist can prescribe.
However, if you can find a nearby prescribing area where Buprenorphine is NOT red listed, you can register there and get the prescription there.
It's madness.Utter madness.
Am I right in thinking if you find a Gp to prescribe Buprenorphine you have to be registered with them at a practice ? I have sent my neurologist about 5 emails via his secretary telling him Im nearly out of tablets but he just isnt responding which is worrying. Ive also spoken to his sec expressing the urgency but again not getting very far !
Yes. You will have to be registered with another practice. One that will issue Buprenorphine in accordance with your neurologist's recommendation.
Hello Cookie,
I will try to relay my experience with Buprenorphine but only in so much as it relates to the patch. In Brasil we do not have access to the tablets.
I use a 7 day 20mg patch of Buprenorphine and it has been a game changer. Most of the time it eliminates my RLS and I sleep like I haven't in 30 years. The only issue for me is that the patch is only effective for me for 4 days. Fortunately my neurologist allowed me to change every 5 days. On the fifth night I experience RLS symptoms for one night, sometimes two. For me the symptoms are not severe on the fifth night. Typically, I am up for 30 minutes to an hour and then I am able to go back to sleep. This is a huge improvement over what my bad nights used to be like. My full on symptoms can be quite severe.
In any case, this medication has changed my life. One would seem to have more flexibility with the tablet but but that is not an option for me.
Good luck to you and I hope Buprenorphine helps. Rivers
Hi Nicola,
Well done for getting of Pramipexole. No mean feat!
You’ll find a lot of posts here about GPs in the UK and their attitude towards prescribing Buprenorphine and other opioids. Essentially it’s a postcode lottery. Some will entertain it, others have it ‘red-listed’ and won’t prescribe under any circumstances. You can check the status in your borough by going onto the online drug formulary for your area. You type in a drug name and you’ll see whether it’s restricted or not.
I’m in North London and it’s strictly red-listed here, however I think I’ve found a workaround, which I am going to post about separately, once I know it works.
Either way you will likely need a neurologist’s letter, confirming you have refractory RLS and recommending low-dose opioids. Joolsg knows far more than I do about all this, so I’m sure she’ll correct me if any of this is wrong, and give you any other guidance to help you on your way. Good luck with it.
Thank you that was very helpful, it’s down as restricted in my area.
I’m not completely off the Pramipexole yet….I've gone from 3 tablets a day to just half a tablet a day but fear (and pain) has stopped me progressing any further.
It’s taken me 4 weeks to get a GP appointment and until I get stronger analgesia I won’t stop the pramipexole.
my advice would be to ask for the pills. As Joolsg said, they are far more flexible. If you start off with, say, a .2mg pill and that doesn’t give you relief within an hour, you can take another. They generally are fully effective within an hour.
The only reason, for me anyway, to consider the patch is to try to minimize adverse side effects. In my experience, the patch can be effective at a lower dose level so that you have a little less of the drug in your system if that lessens side effects for you. But the drawbacks of the patch - losing effectiveness before the 7 days are up, reactions on the skin, the hassle of trying to keep it somewhat dry when bathing, etc - usually make the pills the best choice.
My GP in the UK was happy to prescribe buprenorphine tablets.
Initially when I asked my gp to trial buprenophine, he flatly refused and said it was prescribed for those who were trying to withdraw from class A drugs. Once I persuaded my consultant to trial it, he then wrote a letter to my gp. My gp practice was okay with that and started to prescribe it for me. I have to make a monthly request for it as they refused to give buprenorphine on a repeat prescription basis. I'm in the UK btw.
I’m a manager of a nursing home and I’ve a couple of residents who have the patches for pain control so I will throw that at my GP.
If it’s suitable for a 90 yr old then it’s suitable for me!
I had no trouble getting buprenorphine sub lingual tabs prescribed. And my GP was happy to keep increasing the dose until I found the level to suit me.
I live in South Manchester area
I take one forth of a 2 mg tablet. It's very low dose, but works for me.
so my GP wouldn’t give me Buprenorphine despite my pleas and the evidence that it’s the recommended drug.
She gave me 10mg Zomorph instead and convinced herself it was the same strength to buprenorphine that I was requesting.
So yesterday in my quest to finally stop Pramipexole for good, I didn’t take any!
Took the Zomorph at 19.30…..by 21.00 my legs were off and the pain was unbearable. I managed around 3 hours sleep through the night on and off 😢😢
Has anyone had any success with Zomorph? I know I need to give it some time as stopping the dopamine will severely increase my withdrawal symptoms but I feel let down by my GP again.
Buprenorphine/ Temgesic 
Moving from Gabapentin to Buprenorphine
buprenorphine, pregablin, opiates 
