Buprenorphine and NICE

[Boldgirl45]

Hi everyone - is Buprenorphine approved by NICE in the UK? I know a lot of docs are reluctant so was wondering. Thanks!

[Joolsg]

No.RLS-UK has contacted several research institutions and hospitals to try to get trials so it can be licensed but with no success.

King's College Hospital, the only RLS Clinic in the UK refused.

But the only drugs licensed for RLS are the dopamine agonists and Targinact.

All other meds, including pregabalin and gabapentin are prescribed 'off licence'.

First step is to visit your local pharmacy and ask if Buprenorphine is 'red listed' in your area. If so, only a specialist can prescribe and monitor.

If it's not red listed, most GPs will still refuse unless a neurologist recommends it.

And some GPs still refuse. See HipHop73 posts on this.

There are ways around it.

You can see a neurologist and they can issue a green NHS prescription or ask a colleague locally to do so.

Or you can find an area within an hour's travel where Buprenorphine is NOT red listed and register with a GP surgery there. You will have to travel once a month to collect prescription.

[Joolsg]

I should add that if your mum is still on dopamine agonists, she can use Buprenorphine to get off them and it reduces the withdrawals. BUT she must still get off dopamine agonists.I know of at least 2 people who started Buprenorphine while STILL on dopamine agonists. The Buprenorphine instantly stopped augmentation symptoms, so they stayed on BOTH drugs. Of course augmentation then broke through Buprenorphine weeks/months later and they then had to go through withdrawal from dopamine agonists and the Buprenorphine didn't help.

[Boldgirl45 in reply to Joolsg]

Thanks for both answers Joolsg. Hard work all this isn't it . I didn't realise you could register with a GP that far from where you lived. The prob is that at my mum's age she's continually at the doc's so driving an hour each time for my Dad might be a challenge. But I'm going to think on as to how to make it possible!

[Joolsg in reply to Boldgirl45]

It's crazy. Postcode lottery.Maybe it isn't red listed where your mum lives? But yes, if you change GP surgery you also have to sign a waiver about home visits. They can't do home visits out of area.

[Boldgirl45 in reply to Joolsg]

thank you. I'll pray she's in an area where not red listed!!

[J_J_758 in reply to Boldgirl45]

Have had exactly the same issue! I’ve been flat out refused buper in Yorkshire. He said I was too young??? and needed to manage with paracetamol and ibuprofen (which hurts my stomach terribly) 😢

[J_J_758 in reply to J_J_758]

I do get pregablin though here

[Huntingleroy in reply to Boldgirl45]

Hi , I tried Drs surgerys in next counter and nobody would consider it . Even ones across my town said I was out of catchment. I tried about 15 surgerys

[Huntingleroy in reply to Huntingleroy]

Sorry county not counter !

[Boldgirl45 in reply to Huntingleroy]

Argh - so sorry it’s been so difficult for you !

[Huntingleroy in reply to Boldgirl45]

I got there in the end . With help from Jules on here I sent my new Gp a VERY long letter with reasons why he should let me try Buprenorphine and he actually agreed . I could have cried !

[Boldgirl45 in reply to Huntingleroy]

Wow that's amazing. Is there any chance you still have the letter? Would you mind if we just used the main facts from it to see if my mum's new-ish (and generally open minded) GP might go for it?

Don't worry if not. It's just I think all of this is beyond my father and I'm busy homeschooling my two boys plus the usual work etc!

[J_J_758 in reply to Boldgirl45]

Fantastic news I’m really pleased for you I will preserve as the ‘being too young’ reason can’t last forever however it is exasperating and feel like a cruel battle

[Huntingleroy in reply to Boldgirl45]

No probs , i will precis it down and send it to you on private chat

[Boldgirl45 in reply to Huntingleroy]

You're so kind! Thank you so much

[Gonzo123 in reply to Huntingleroy]

Can I have a copy as well because my GP will not prescribe Buprenorphine either

[Huntingleroy in reply to Gonzo123]

Hi , it wont let me copy and paste so I will send it to you over the weekend.

[Gonzo123 in reply to Huntingleroy]

Thankyou