The horrible nasty side of me would love to hire those russki elements responsible for certain novichok poisonings, to sprinkle a little bit of RLS virus( yeah, I know 😎) into certain medical establishment figures' teatime coffee.
Only then ,we might get a smidgen of sympathy and understanding.☠️😹
Agreed, but at least *some* signs of movement in Newcastle - and they mention pregabalin without saying they are reluctant to prescribe it because of quote "levels of abuse on Tyneside".
That's true. But the usual warning about opioids. Only to be prescribed if RLS presents as painful AND the usual opioid bias about addiction.When DAs are actually the most addictive of all.
I have some depressing news to add to this. Our Professor Walker is still recommending DAs. He did so with me recently, after sorta acknowledging they could be an issue with augmentation.
What's worse? Someone I know is an MS patient at the same trust he works at. This person's MS Neurologist decided to prescribe them DAs based on Prof Walker's recommendation. The result? They nearly had a heart attack, were hospitalized with extremely high blood pressure and heart rate from 1 dose.
This terrified and enraged me! How can they hand this stuff out like candy and it can kill you from a single dose?!
We have such a long way to go to get over this hurdle but we can't give up!
Oh my word. Horrifying.I knew Prof Walker was still prescribing Rotigitone- but I am stunned that he is still prescribing other DAs as first line treatment.
It should be part of ongoing neurological training that neurologists have to read all posts on this forum for a month.
The problem is that they don't see enough RLS patients each year so they don't see the serious side effects happening in real time.
And they NEVER help patients through the hellish withdrawal when augmentation inevitably happens.
Another bad thing is they said the maximum pramipexole is one and a half times what it really is.
And of course" increasing gabapentin/ pregabalin every few days until controls symptoms" is not the best way as it can lead to higher doses than needed.
True! And the first thing on the website is a warning about DAs & in the treatment section confirms RLS-UK follows the Mayo Algorithm and AASM guidance.The reduction schedule of 25% a week is very blasé.
Most people, unless incredibly fit, healthy & resilient could not get off 4mg of Ropinirole in 4 weeks!
Unless they were in a state of the art Rehab facility.
These neurologists need to watch/observe someone going through DA withdrawal!
Hi Joolsg, you wrote "BUT they still advise dopamine agonists as second line treatment ( after gabapentinoids) with a warning about augmentation and ICD". I thought DAs were second line treatment after alpha2-delta ligands? According to Mayo Clinic website.😊
Yes. But not in the new AASM guidance released in January 2025 where all dopamine agonists are now 'NOT RECOMMENDED'. They use examples of when DAs can be prescribed. Where short term benefits outweigh inevitable longer term complications.
So a one off prescription for a long flight. Or end of life where patient has a terminal illness. Or someone who is very old and unlikely to live long enough for augmentation to set in.
I was hoping the UK neurologists would read all available research and treatment protocols and warn against DAs in the same way that the AASM has.
They are only recommended under certain special conditions such as obesity and its complications, gait instability, disorders causing respiratory failure, previous history of substance disorder
Clearly not. They mention its use for 'painful' RLS. Ignoring the fact morphine was used for non painful RLS very successfully in 1670 & thousands of us take opioids very effectively for non painful RLS.We just have to keep sending them the research and hope they bother to read it.
I have seen a neurologist in sussex twice now on the nhs.. I'm taking two prami And 2 x 5 Milligrams oxycodone , But my
r l s is not under control And I think now he is going to tweak my meds as he calls it. I Would like the prami to be weaned off As I feel even after about ten years that it may be augmenting now. He asked me if my RLS was painful.And I said yes , but I couldn't describe it , which he found strange. The fact is , I try not to think about it. And deal.
With it as best I can, Sticking to the rules: pills on time, No travelling late in the afternoon.or being in confined spaces eg theatres , Regular bedtimes and so on.
The one way I could describe my rls to him was that I feel that my legs are screaming. Being tired and not even being able to sit down If i'm late with my meds It's tortuous as we all know. I hope and believe that he will help me, But what is for the best.
You and some of the others have been so helpful over the years, so I thank you and may have to communicate with you again when I find out what is offered to me..
I was in denial for around 5 years. I was clearly suffering augmentation on Ropinirole. Like you- I couldn't sit still during a cinema show or a car journey.
Getting off Ropinirole was the worst experience of my life. But also the best thing I've ever done. My daytime RLS disappeared.
But it took another 5 years to find a solution to cover my severe RLS. Low dose buprenorphine sub lingual pills.
I spoke to a great neurologist last week. Based at Queen Victoria Hospital in East Grinstead.
Dr Oliver Bernath.
He's German but has trained in USA with some of the top experts.
He will prescribe Buprenorphine to help patients get off Pramipexole and through the brutal withdrawal.
But he did say that he often recommends Buprenorphine to patients but the GPs refuse to prescribe it.
This is why the RCGPs really need to listen to RLS-UK and teach RLS to GPs as part of continuing education.
Thank you .... I augmented on ropinerole many years ago. But Was changed to pramiprexole... And so it has gone on. Can't talk about it any more at the moment but I will get back to you in the future. Best wishes to us all x.
Why don't people with rls go in Boy's and spend £2 on what appears to stop my rls ,as last night my peripheral N was giving me pain in my foot which was also activating rls points so I couldn't sleep ,I had it fixed and asleep quicker than I expected🤔
I know you rub a roll of anti perspirant on trigger points. I'm delighted it works for you.But it doesn't work for me. Even using a deep tissue massage gun on trigger points did nothing for me.
There are lots of alternative methods that work for some people.
Taking ferrous bisglycinate every night stops all RLS for a number of people on here.
Following a low carb diet works for others.
Taking magnesium pills works for others.
But everyone responds differently.
And I'm sure most people with RLS will have tried hundreds of suggested solutions. I know I did.
I have a cupboard full of herbs, supplements, gadgets, grounding sheets, weighted blankets, restiffic foot wraps, compression socks, copper bracelets etc.
I have zero RLS now. Ever. But it did take me over 5 years of trying every possible solution /med to get to this stage.The only thing that has worked for me is low dose buprenorphine.
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