Buprenorphine

[Gonzo123]

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.

[Joolsg]

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.

[Gonzo123 in reply to Joolsg]

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.

[Joolsg in reply to Gonzo123]

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.

[Gonzo123 in reply to Joolsg]

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

[Joolsg in reply to Gonzo123]

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??

[Gonzo123 in reply to Joolsg]

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

[SueJohnson in reply to Gonzo123]

Amitriptyline makes RLS worse for most so there is no need to wait to get buprenorphine to wean off it.

[Joolsg in reply to Gonzo123]

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.

[Gonzo123 in reply to Joolsg]

I will thanks. I haven’t got a clue how I will be able to get Bup on the nhs now.

[Joolsg in reply to Gonzo123]

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.

[Gonzo123 in reply to Joolsg]

I’ll think on that one and wait a while until I get a few more answers. Thanks

[Gonzo123 in reply to Joolsg]

Jules I have contacted LLais Wales and if you google it you will see what they do in Wales and hope they can help

[Joolsg in reply to Gonzo123]

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.

[Gonzo123 in reply to Joolsg]

I’ll keep you informed but may take some time awaiting another response from practise manager first

[Knittingasweater in reply to Joolsg]

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!

[Joolsg in reply to Knittingasweater]

Same here. I had logically planned to end things. Asking Prof.Chaudhuri for Buprenorphine was my last ditch attempt. It nearly failed but I pushed.And it was just miraculous from Night 1.

[Boldgirl45 in reply to Joolsg]

Joosg mind posting the link to the Massachusetts opioid study? Thanks!

[Joolsg in reply to Boldgirl45]

I posted in response to your other post but here it ismassgeneral.org/rls-registry

[Boldgirl45 in reply to Joolsg]

Thank you! Not sure why I was not alerted to that

[Huntingleroy]

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 !

[Gonzo123 in reply to Huntingleroy]

I keep chipping away and certainly Jools is very helpful.

[Claire_lc in reply to Gonzo123]

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!

[Huntingleroy]

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

[Laineypl]

Yes we are in England. That's sh** for you not being able to get it.

[Laineypl]

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.

[Gonzo123 in reply to Laineypl]

Thankyou

[HipHop1972]

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

[Gonzo123 in reply to HipHop1972]

Thankyou. I will look into this and report back. You are all very kind

[Bowie4eva]

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

[Gonzo123 in reply to Bowie4eva]

Thankyou. I had a bit of a snotty letter back off the Practise Manager and I have sent her a rebuff. Waiting a reply