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.
Seriousconcern here from elderly sufferers who just about manage their RLS but find the whole process of coming off pramipexole frightening (having been cut off before after review)) .Going cold Turkey in your eighties is awful. How do we cope if DAs are banned. At the moment we are on pramipexole and codeine. We are two neighbours both in our eightieth decade ,we both have RLS ,who have coped for years and years . Any suggestions …. I’m not sure we could cope with trying to come off DAs without literally going round the bend !! Banning DAs could cause a major problem
They will not be banning DAs. They will be last line treatment hopefully. After gabapentinoids and low dose opioids.The Guidance is just that. Guidance. GPs do not have to follow it.
So please do not worry. Dopamine agonists will still be available for years.
I really hope that UK GPs agree to learn about RLS fully. Including helping people to get through withdrawal.
Withdrawal is extremely difficult. And doctors have to realise that.
I think it's criminal that doctors have prescribed these dangerous drugs and have failed to review their patients.
Most people WILL be experiencing drug-induced worsening on Pramipexole if they have been taking it for years. Doctors tell you it's because the disease progresses.
That is usually not true. If we receive the right treatment- we can be free from RLS.
In your case, and your neighbour, if you have been taking Pramipexole for years, your RLS will have worsened because of Pramipexole.
There is a withdrawal schedule set out on RLS-UK website.
If you decide to get better coverage of your symptoms- you should seriously consider a slow withdrawal.
There are some enlightened doctors who realise how hellish withdrawal can be. They will prescribe Buprenorphine to reduce the severity of withdrawal symptoms.
I know a few specialists who will do this. You could ask for a referral now.
Dr Guy Leschziner at Guy's. Dr Oliver Bernath at Queen Victoria, East Grinstead. Dr Robin Fackrell in Bath. Dr Chris Murphy in Salford.
You can start the process now. It will take several months to get the specialist appointment on the NHS.
Being in your eighties is not too old to come off a DA unless you don't expect to live much longer. I am in my eighties and came off a DA and others on this forum have too. Does it completely control your RLS?
The problem is almost everyone and some experts believe everyone will eventually suffer from augmentation and then you will have to come off it and you don't want to be doing that in your nineties. You and your neighbor would be smart to come off it now. If you decide to, post back here and we can give you some advice.
I see you are taking sinemet. That is not technically a DA although it works like one and is no longer advised for treatment of RLS. It is used for Parkinson's. How much are you taking?
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. This is the first thing a doctor should do. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Looking at your profile and past answers I see a couple of things that might be making your RLS worse. Are your still taking omeprazole? It is a proton pump inhibitor and RLS-UK says most proton pump Inhibitors worsen RLS. Gaviscon Advance is a safe alternative. Be sure it is the Advance unless you are bothered by aspartame in the tablets or sachharin in the liquid.
You also asked about statins. All statins make RLS worse. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res.... If taking an ACE inhibitor or an ARB your potassium level should be checked as they can raise potassium levels.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
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 😔
As an American I think of universal health care being homogeneous, including treatment guidance. When I hear you guys complaining about certain jurisdictions having different guidelines in treatment and ability to prescribe certain medications it blows me sway.
Yep. Utter madness. Free healthcare. Operations are generally good. No one will ever be denied an emergency operation on wealth grounds(or lack of it). But the rules on opioids and restricted meds like gabapentinoids are different throughout the country.My friend gets free cannabis for her MS. She lives 3 miles from me in London. I pay the same taxes but I can't get free cannabis as my health formulary is different!
And someone in North London, 7 miles from me is not allowed Buprenorphine even if a top specialist recommends it. But if she changes doctor surgery to South London she can get it!
Crazy, crazy rules. British eccentricity at its finest.
Also take a copy of the part of the Mayo Algorithm where it says the usual effective dose is 1200 to 1800 mg at Https://mayoclinicproceedings.org/a...
I may have given you this information before but in case I didn't : increase it by 100 mg every couple of days until you find the dose that works for you. Ask for them as you don't want to increase it more than you need.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason.
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.
That is brilliant. Can you screen shot the bits where they used to say DAs and pregabalin were equal first line treatment and send to me by DM or on here And the bit about stopping DAs. The BBC journalist would very much like to know the changes.Xx
That is very interesting. I actually looked at SE London formulary yesterday with the BBC journalist and it said pregabalin and gabapentin had to be prescribed by a specialist.
Thanks Davchar.The BBC have been investigating the horrific Impulse Control Disorder cases and contacted RLS-UK for help.
RLS-UK directed them to many patients that have brought legal action and won substantial damages against their doctors.
They have also dug deeper and realised the drug companies have known about the extent of this and feel they need to be doing more. Sending out alerts etc.
They are in touch with French colleagues and know of at least one person in prison for 'deviant sexual behaviour' totally out of character.
So they are doing a radio show on BBC Solent tomorrow and a BBC South TV news piece, backed up by a national social media piece this week.
And they've written to NICE, RCGPs and ABN.
RLS-UK also wrote to the ABN very recently to ask them to reconsider their stance on dopamine agonists and we told them about our recent survey in August where 55% of those on dopamine agonists were showing signs of augmentation and 11% signs of ICD.
And RLS-UK has been lobbying MPs and asking for change. So quite a few MPs and the last Health Secretary and the current Labour Health Secretary are aware of RLS-UK campaign.
I suspect all this has ruffled some feathers over the last month.
And if the Netflix programme gets made- that will really open the flood gates.
But even though this has been done quietly, under the radar, it's excellent news. Especially for newly diagnosed patients.
But whether GPs will read it or be aware of it is another matter.
Exactly! It will really help anyone whose GP or neurologist refuses to prescribe gabapentinoids. Or insists they have to tey DAs first.It's a really positive development and hopefully the NHS website will follow suit & then local formularies.
But we will need rehab provision to help elderly people get through withdrawal safely.
Ta HuntingLetoy, but, As I've said to others- not just me. It's a multi pronged approach.But I have no idea why NICE changed the guidance to include the AASM when the NHS website hasn't changed. Nor have local formulary prescribing rules.
I'm off to Seville on Thursday so will definitely be drinking Rioja, cocktails etc. Luckily alcohol was never a trigger for me. And with Buprenorphine- I shall celebrate in style. Xx
Moving slightly in the right direction . Particularly great that DAs are no longer first line. BUT so many things are still wrong in the guidance .
The sneakiness , as you say Joolsg is very wrong and without shouting it to the rooftops and at the very least informing RLS-UK and GPs’ journals , neurologists’ journals and medical schools so students can at last start to be taught at least some of the correct management.
Basically they know they have been ‘found wanting’ and are going to endeavour to avoid open discussion about how this DA debacle should never have happened. There were warnings as far back as 1972…and things went very awry in the ‘noughties’.
Pharmaceutical companies, FDA , MHRA and some senior clinicians are to blame and will never own up.
have a wonderful time in Seville… unfortunately alcohol is one of my triggers…but occasionally I have and really enjoy 1-2 glasses of red wine and pay for it later with a lousy night..😋🍷😱😔😔😔😡
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