It's sad when even a respected organization of RLS experts still recommends DAs.

[SueJohnson]

The International Restless Legs Syndrome Study Group (IRLSSG) is an organization whose members are "professionals committed to advancing basic and clinical research on RLS"

Their members include RLS experts from around the world including all the ones we know.

However on their website under Treatment they list 2 studies. One is on iron and is fine. The other is an outdated 2013 article that reviewed studies on RLS medicines.

It recommended levodopa, rotigotine gabapentin enacarbil and pregabalin. It did not recommend gabapentin, tramadol, methadone or any other opioids nor intravenous use of ferric carboxymaltose or iron sucrose.

It did mention augmentation, however it summarized by saying "Either dopamine-receptor agonists or the a2d ligands are the first-line treatment"

This is even though at their 2024 Annual Meeting they had experts we all know speaking and they discussed the new AASM guidelines.

I wrote to the secretary pointing this out and suggesting they delete that article and add the Mayo Algorithm and the ASSM guidelines and asked her to pass it on to the Executive Director. It will probably be ignored

[Madlegs1]

Crazy!

Any ideas on why this position has been taken-?

I can't imagine that big Pharma would be involved,unless the Parkinson's treatment is being threatened??

If you can give us an email address to write to ,we could all ask them politely to consider a sane approach?

[SueJohnson in reply to Madlegs1]

[e-mail] and asked to pass on to executive director Allan O'Bryan

[LotteM]

I know. I looked at their website before and was hugely disappointed. I suspect there are some very -let’s say- ‘conservative’ and maybe also stubborn people among them. Apparently, they do convene, not often but regularly enough (once a year?), but don’t produce much. And certainly nothing curring-edge.

[Joolsg]

Not surprised. Dr Buchfuhrer and Berkowski have said that their European counterparts are still wedded to DAs and they had to agree to certain compromises to reach consensus.But the only people who suffer are patients.

I know Germany and France still prefer DAs. I've had arguments with the French patients group. They still promote DAs and insist they definitely do NOT cause augmentation at low dose. Their neurologists have 'reassured' them.

It's futile trying to argue with such people.

It's only when you see the same problem over and over again that you can join the dots.

[Jumpey]

So frustrating and upsetting.Thznks foectrying to feedback on behalf of sufferers.

[Ticki]

thank you for that information Sue it’s always good to be up on what’s going on even when they’re way behind.❤️‍🩹