The RLS Foundation changed what they ... - Restless Legs Syn...

Restless Legs Syndrome

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The RLS Foundation changed what they had for medications

SueJohnson profile image
SueJohnson
β€’20 Replies

I just went out the the RLS Foundation website under Treatment --> Medications and THEY HAVE CHANGED IT !!!

It no longer has the 4 listed FDA approved drugs on separate lines with a blank line between each one giving the impression that the DAs are the way to go.

See rls.org/treatment/medications

πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€

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SueJohnson profile image
SueJohnson
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20 Replies
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ChrisColumbus profile image
ChrisColumbus

Well done: while they said that they were going to do this, I'm sure your email expedited it!

Sandalsforever profile image
Sandalsforever

that’s great, I was looking at it a couple of weeks ago and was shocked to find DA as the first line of drugs, so glad they updated it.

RLSLearner profile image
RLSLearner

great result!

Believer1234 profile image
Believer1234

That's such good news πŸ™‚. Does anyone know if this could result in a change to the NICE guidelines in the UK?

Madlegs1 profile image
Madlegs1 in reply to Believer1234

"One does not need to slavishly follow what the colonies do"

Double irony intended!😝

Believer1234 profile image
Believer1234 in reply to Madlegs1

🀣

ChrisColumbus profile image
ChrisColumbus in reply to Believer1234

Joolsg and RLS-UK are working on it, but NICE aren't nice (just my personal opinion!)

Believer1234 profile image
Believer1234 in reply to ChrisColumbus

A very slow and arduous process I should imagine but at least with RLS updating their guidelines, it's a help as I think GP's do look at this too.

Believer1234 profile image
Believer1234 in reply to Believer1234

The interesting bit here is the iron infusions as it's virtually impossible to get one approved if your iron levels are in the 'normal' range.

ChrisColumbus profile image
ChrisColumbus in reply to Believer1234

It seems to me that some (most?) of the UK establishment is resistant to following guidance and advice from the US, including in the case of RLS that from the Mayo Clinic - and potentially this from the RLS Foundation. Some individuals will take notice if it's drawn to their attention.

As you say it remains difficult to get iron infusions on the NHS for anything other than anaemia. And even 'experts' like Prof Chaudhuri at Kings believes that the potential benefits of infusion for RLS are small and outweighed by the 'dangers'. A further US recommendation for "Intravenous iron treatment" is unlikely to change his mind.

But I know that Jools etc will continue the fight!

Madlegs1 profile image
Madlegs1

Some achievement, Sue!!

Powerful.

grassgree profile image
grassgree

This is fantastic! Your letter did it.

Merny5 profile image
Merny5

That is great news Sue! I was quite astonished when I read that! Thank you for doing the leg work. It is greatly appreciated! My hope is that no doctor has read that in the meantime

That’s brilliant. Thank you for all you do in this regard.

Noddedoffagain profile image
Noddedoffagain

Thank you Sue for all you do for us RLS sufferers. So grateful!

Jumpey profile image
Jumpey

Good news.

AmyMac5 profile image
AmyMac5

Well done Sue, and a huge thank you for all you do for this community.

Simkin profile image
Simkin

πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜€πŸ˜ƒπŸ˜€πŸ˜ƒπŸ˜ƒ

Edengirl58 profile image
Edengirl58

Well done Sue, and thank you πŸ™πŸ‘

DogBella profile image
DogBella

Thank you!

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