My GP still refuses to prescribe Buprenorphine even when Dr Fackrell has sent e mails and a letter recommending it. All of you who are lucky to get your GP to prescribe it do you live in England because I live in Wales and apparently different rules apply here.
Buprenorphine: My GP still refuses to... - Restless Legs Syn...
Buprenorphine
Yes, different rules apply. But Buprenorphine can definitely be prescribed there.But different surgeries have different rules. It's the same in England. Some GPs will prescribe Buprenorphine. Others refuse.
I know at least one person who has a prescription of Buprenorphine in Wales.
Can you write to the practice manager asking for a detailed explanation of their refusal. And then send it to the head of the Welsh NHS together with Dr Fackrell's email?
This madness has to stop.
GPs know zero about RLS or how Buprenorphine works so effectively for RLS.
Did you use the template letter I sent you by email? The research article by Dr Andy Berkowski and the Massachusetts Opioid Register should help persuade them
Can you change surgery?
I know a few people have done so here in England.
I sent all the literature you gave me thanks but without any luck. The GP wrote to me and said" The medication is being used in an unlicenced way, has associated risks of addiction and currently appear to be prescribed on a variable dosing regime. Although the treatment may well be prescribed regularly by your treating specialist it is not a common treatment in primary care, and we do not feel able to take resonsibility for prescribing the medication"
I have asked for a further review of the decision and an appointment where I can air my views face to face.
As for changing my surgery I could be falling out of the frying pan into the fire, who knows
It really annoys me that they do not listen to Specialists in this field and have the power to do what they want and become bloody minded and will not change their minds at any cost.
And they clearly didn't bother to read the Massachusetts opioid study which is now in its sixth year and is proving low dose opioids are not causing addiction or tolerance in RLS patients.Basically they are saying that they have zero training in RLS and the effectiveness of Buprenorphine. And they are not prepared to listen to an expert or help a patient whose quality of life is poor.
It's unacceptable.
Out of interest, exactly what do they propose????
They can't leave you with untreated RLS.
They haven’t proposed anything because I am on Rotigotine patches now. I haven’t asked them about my rls because I went privately to Dr Fackrell. I know what they would do and that is put me on other meds which I have tried before
Understand. So you were planning to use Buprenorphine to help you get off Rotigitone?Out of interest, how did Dr Fackrell suggest you titrated up on Buprenorphine and down on Rotigitone??
He just wrote that I should slowly reduce Rotigotine. He also suggested to my GP to reduce my Amitriptyline and stop taking it over the next few weeks. I have not done any of this until I can get Buprenorphine
Amitriptyline makes RLS worse for most so there is no need to wait to get buprenorphine to wean off it.
You should DEFINITELY reduce Amitriptyline now. Don't wait.Amitriptyline is a major trigger for RLS. Getting off that slowly will settle your symptoms and then you can start reducing Rotigitone when you have Buprenorphine.
I will thanks. I haven’t got a clue how I will be able to get Bup on the nhs now.
Keep writing to your surgery. And DO investigate switching surgery. Have a detailed chat with the practice manager & explain that your neurologist recommends buprenorphine but your old surgery did not have the knowledge or experience to prescribe it!.You can also find a GP surgery within an hour's travel and ask if they will prescribe. The NHS allows you to register at ANY GP SURGERY. But the surgery has to agree to take you on.
Annoying, but worth the trip to ask.
I’ll think on that one and wait a while until I get a few more answers. Thanks
Jules I have contacted LLais Wales and if you google it you will see what they do in Wales and hope they can help
llaiswales.org/have-your-sa... look VERY interesting. You can tell them that Dr Jose Thomas at Aneurin Bevan Hospital trust is an expert on RLS and he prescribes Buprenorphine.
Good luck.
not unless the want u to end up blowing your head off...sorry but this is where I was at before i was prescribed BEPRENORPHINE!! saved my life that plain that simple!
Joosg mind posting the link to the Massachusetts opioid study? Thanks!
I posted in response to your other post but here it ismassgeneral.org/rls-registry
Dont give up ! I changed Gp because they said they would prescribe Bup then they changed their mind . With Jules help I sent a very long emotional letter to the Gp in charge and he relented in the end . The fight took me months but well worth it !
I keep chipping away and certainly Jools is very helpful.
I also changed GP and managed to get it prescribed. I've since written to the partners at my local (non-prescribing) practice outlining the reasons they should reconsider and emphasising the fact that I've gone from suicidal to a normal person again.
They replied saying they understood but couldn't prescribe outside the local drug formulary without the input of Queen Square, the neurological department of UCLH. So I've written to Queen Square and await their response. I'm not hopeful though.
Your best bet really is to travel out of area to a practice where the formulary allows it. Tell them you work in their catchment area!
I tried about 20 Gps in the next county, even said I worked there but nobody would vaguely consider it as " not in our catchment ".I quoted nhs criteria but pointless. One Practice where I live said they would probably consider prescribing it once I was "stable " ( my neurologist was still prescribing it monthly ) I wrote twice and asked what they meant by "stable ", as in what length of time but guess what never even replied . So ignorant
Yes we are in England. That's sh** for you not being able to get it.
My husband saw Prof Chris Murphy in Manchester n he sent a very good, factual letter to our GP which included that although buprenorphine is not licensed for RLS it is only guidelines and NOT illegal to prescribe. That did the trick as previously several Gps at our surgery had refused.I realise you must be exhausted with it all n having to fight your corner for your own health and wellbeing is disgraceful. Although it would be added cost it may be worth seeing Prof Murphy, he'd support you fully.
Hope you get your answer, best wishes.
Hello Gonzo123. I am furious on your behalf as it’s a mirror image of my storey reducing Ropinirole. I consulted a Doctor Thomas in Cardiff as at the time he was the only Specialist in RLS I was aware of and I live in the North West. After undergoing many sleep tests Doctor Thomas wrote to my GP requesting he prescribed various medications for Refractory RLS, but my GP refused to prescribe Buprenorphine even though I’d flooded the surgery with papers on Refractory RLS and it’s treatment and everything I could find from the Mayo Clinic. Anyway I receive prescriptions for Buprenorphine through a Specialist and the Hospital couriers it to my home.
Maybe Doctor Thomas at the Spire Hospital in Cardiff would be willing to do the same. He is very helpful and gave a talk at RLS-UKs annual general meeting in, I think 2023. The spire is a private hospital but I know he works out of Cardiff General Hospital (NHS) as well and unlike me you are a Welsh resident. I will try and find a telephone number for you, but I’m sure you could Google him, he’s actually a specialist in sleep disorders but they tend to know more about RLS than general Neurologists. Joolsg knows him so may be able to provide a contact if I have deleted mine.
Good luck and very best wishes HipHop1972
Best of luck, Gonzo, I too am trying to get Buprenorphine because of unbearable and continuous RlS day as well as night, indeed while I’m writing this. So far I’m getting sympathy and a lot of talk about protocol but not a lot else!! Am currently waiting to hear. Joolz’ idea of writing to Practice Manager etc is a good one.
Thinking of you and best of luck. Success will surely be ours in the end!! 🤔x
I started taking BUP about 3 weeks back. It fixes the restless legs and I now sleep frequently and deeply..
In an attempt to learn more about the drug, which my GP keeps warning me about, I did some research.
One particular thing stood out and that was constipation.. BUP stops the body from expelling waste.. Dont leave it too long before you decide something needs to be done.
The article I read has some interesting points to make and is making me think about my own BUP intake.
Here is some of what it says "Buprenorphine is a wonderful gift for these people—if they remain on it. But, years of exposure and receptor up-regulation have burned permanent cravings in all of them. Even when sober, they are always at risk, should they bump into any of their old drugs of choice. And the narcotics are everywhere—weddings, funerals, bars, parties, even the break rooms at work. I try to explain this risk by using analogies such as the opening greetings at AA meetings: "I'm John. I'm an alcoholic, sober for 20 years." No one ever gets up and says, "I'm John. I'm an ex-alcoholic."
The attraction and the cravings are always there, hidden just below the surface. No one takes John to a bar to celebrate 20 years of sobriety and expects him to stick with soda. Too dangerous. My patients can't watch "Intervention" on TV because they get drug dreams and morning cravings. They can't look away from narcotics once they stumble into them. I've written about this before, what I call the "Bikini Model of Addiction." If the office door opened and a stunning blond in a Bikini walked in, no one is capable of looking away. The men are hard wired to look at the girl, and the women are hard wired to look at the shoes.
But, as wonderful a medication that it is, buprenorphine has its price."