British article on RLS by Newcastle H... - Restless Legs Syn...

Restless Legs Syndrome

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British article on RLS by Newcastle Hospital Neurologists.

Joolsg profile image
11 Replies

acnr.co.uk/articles/dopamin...

A rather depressing recent article on RLS by two British neurologists from Newcastle hospital.

They do at least acknowledge that iron therapy and replacing trigger medications should be first line treatment.

BUT they still advise dopamine agonists as second line treatment ( after gabapentinoids) with a warning about augmentation and ICD.

They also recommend a DA withdrawal schedule of 25% reduction a week!

We still have quite a way to go in changing teaching in the UK.

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Joolsg profile image
Joolsg
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Madlegs1 profile image
Madlegs1

Oh deary me!

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.☠️😹

ChrisColumbus profile image
ChrisColumbus in reply toMadlegs1

😃 Naughty but nice Madlegs!

Madlegs1 profile image
Madlegs1 in reply toChrisColumbus

That's me- sugar n spice!☘️

ChrisColumbus profile image
ChrisColumbus

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".

Joolsg profile image
Joolsg in reply toChrisColumbus

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.

But you're right. Baby steps....

HappyGreenBean profile image
HappyGreenBean

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!

Thanks for sharing this Jools.

Joolsg profile image
Joolsg in reply toHappyGreenBean

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.

HappyGreenBean profile image
HappyGreenBean in reply toJoolsg

110%

SueJohnson profile image
SueJohnson

The good thing is he mentioned RLS-UK. 😀

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.

Joolsg profile image
Joolsg in reply toSueJohnson

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!

SueJohnson profile image
SueJohnson in reply toJoolsg

Absolutely!

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