NICE have sneakily and dramatically changed UK RLS guidance. 'Last reviewed in Feb 2025'.No announcement. No consultations.
Just a complete change in prescribing guidance!
Probably because RLS-UK has been campaigning hard over the last year to get RCGPs and ABN to stop prescribing dopamine agonists as first line treatment because of the very high rates of Augmentation and Impulse Control Disorder.
And the BBC have been investigating and asking lots of questions.
3 months ago the NICE guidance had dopamine agonists and gabapentinoids as joint first line treatment.
Today- the guidance has gabapentinoids as first line treatment. And a statement that due to high incidence of augmentation and the risk of ICD, dopamine agonists should not be first line treatment.
That is a fantastic development. But why no announcement? Why the secrecy?
It's all rather moot though because it is GUIDANCE and UK doctors do not have to follow it.
And each UK formulary has its own prescribing rules. For example SE London does not allow GPs to prescribe gabapentinoids! Only a specialist can do so.
But, even though it's been changed rather sneakily, it might help patients argue against DAs in the future.
This is great news, but you're right, it's not a mandate. Here in Belgium, when I first saw my Neuro Doc last year, she immediately suggested pramipexol. And still is trying to get me to agree. I find this incredibly negligent. Do these docs ever actually read their Journals???
Interesting that it says under Changes (My emphasis on the last sentence):
"February 2025 — reviewed. A literature search was conducted in January 2025 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of this topic. *No major changes to the recommendations have been made*.
Will the NHS web page on RLS treatment (still leading with DAs) be updated similarly when it is reviewed on 23 March? Not sure if that is an “automatic” after NICE guidance update or not necessarily.
No. NHS page has always been different. But, possibly after the BBC reports, they may decide to follow the latest research and evidence. Fingers crossed.
This is great news Jools. My gp is adamant that 300mg of Gabapentin is the maximum she can prescribe, I will be taking this in to the surgery this week ! As I sit here having just taken my 2nd 300mg tablet of the evening and pacing my way round the house 😔
Hello Joolsg, well that’s a turn up for the books, but why not go the whole hog and just ban DAs unless there’s a very specific reason to prescribe them. It appears to me that the secrecy is down to the fact they’ve been caught out with there pants down so didn’t want to make a song and dance about it. Talk about sneaky buggers, so it proves your starting to knock holes in their misguided doctrine.
This is excellent! Also the face that they have opioids as 2nd on the list as I think those help many.
I have the “old” version printed out so will be interesting to compare but I think the bit about avoiding abruptly discontinuing DA’s is also new?
Strange that it’s been done secretly though and that they’ve not the changed the date of the update hmm I smell a litigious rat!
I hope RLS-UK shout loud and proud about this.
👏 well done to all that have contributed to this significant change that people can take to their UK GP’s/neurogists they love a bit of NICE guidelines to cover their asses.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Medscape article on RLS
