RLS treatment Australia

[ChickenTwisty]

Here is the latest I can find on treatment recommendations in Australia. It is consistent with the latest US advice and includes the option of opiods as last line treatment in refractory (including augmented) RLS. www1.racgp.org.au/ajgp/2023...

To my mind it does understate the DA risk but it does acknowledge it.

Gabapentin and most opiods remain off label. Targin is the only opiod approved by TGA (ebs.tga.gov.au/ebs/picmi/pi... for RLS that I am aware of, though in a few months you may be flagged. In my case I was then referred to pain clinic and after educating them I was prescribed Buprenorphine, a necessary step was that I described my symptom as pain (something Dr Winkelman noted in his SLEEP 2024 talk).

It wasn't stated but I also believe Buprenorphine can be prescribed on PBS because is approved for opiod withdrawal (and if you have chronic augmented RLS where only opiods are effective then you are in my view dependent on them). Buprenorphine is approved for chronic pain and opiod withdrawal.

Two years later I remain on a lower than fully effective dose (10mcg patch) but after 10 years on 1mg sifrol^ and becoming symptomatic 90% of 24/7 in arms and legs I now routinely get 5 or 6 hours sleep a night, occasionally more with symptoms only a few times a day.

^ TGA approved Product Information (PI) recognises augmentation and has max dose at .75mg, but provides for ceasing at lower dose if augmentation occurs, something I was unaware of until too late.

[ChickenTwisty]

"Interestingly, although kidney transplants reverse RLS within days to weeks,8 dialysis has not been shown to improve the symptom burden significantly.9"

In which case I wonder what research has been done into related medications such as anti rejection medications for RLS

[ChickenTwisty]

Just to add my experience was in SA and the pain clinic was at the QEH who then consulted with Dr Dang (who many in SA will recognise as a leading RLS specialist and sleep physician).

[Wordsworth99]

Thanks for sharing that ChickenTwisty, it’s interesting to read the Australian recommendations. Are you happy with 5-6 hours of sleep per night? I know it’s best to be on the lowest dose possible, to minimise side effects, so I was wondering if that’s why you remain on a lower than fully effective dose?

[ChickenTwisty in reply to Wordsworth99]

It was such a struggle and there was initial relief to get that much sleep and I was worried it would be taken away. Two years on I would love more sleep and was arming myself with the current information to go back into battle.

[Joolsg]

Thanks for sharing. It's encouraging to see that they have gabapentinoids as first line meds. The UK still hasn't done this.And yes, they should banish dopamine agonists, but this is a great step forward.

I suspect the Mayo Clinic Algorithm will be revised shortly, to take account of the new American Academy of guidance.

Hopefully Australia will follow and then the UK.

[Mongolia2020]

hi Chicken Twisty

Thank you for sharing and I note the significance of describing RLS including “pain”. That in itself may help others when trying to push for opioids. Also your description of augmentation being akin to dependence on opioids. It think this could be a very helpful tool for others to do battle with their Drs.

Thanks again