Refractory RLS Study

[Joolsg]

sciencedirect.com/science/a...

A new study on refractory RLS recommends NOT starting young patients on dopamine agonists.

Hopefully, we will start to see more and more of these studies and they will condemn the use of dopamine agonists.

[amrob123]

Too late for me Jools! 😲I haven't opened the full article but was interested to read that it concludes that:

"Botulinum toxin is an effective second-line treatment for RLS."

[707twitcher in reply to amrob123]

That caught my eye, too. Looks like there were some studies done, but they seem to be circa 2007. Anyone here tried Botox for RLS? Likely to be expensive, not covered by insurance, and good luck finding someone who has done this before and knows which muscles to inject. Still, I'm intrigued....

[ChrisColumbus in reply to 707twitcher]

But this 2012 study, quoted in the references to the above 2024 paper, ended:"In conclusion, our results show no indication for a BoNT/A (intradermally injected botulinum neurotoxin type A) treatment benefit in RLS..."

sciencedirect.com/science/a...

[fritzb43 in reply to ChrisColumbus]

Keep in mind this is only ONE study. Show me 10 more and I might become interested.

[ChrisColumbus in reply to fritzb43]

Indeed - (as I posted below 2 days ago as well): one against, one for.

[ChrisColumbus in reply to 707twitcher]

On the other hand this 2017 study concludes that:"BoNT (botulinum neurotoxin) is a safe and effective treatment in a variety of movement disorders, but better understanding is needed as to its peripheral and central mechanisms."

doi.org/10.1016/j.toxicon.2...

"Restless legs syndrome (RLS) usually can be managed with medications but some patients with disabling symptoms despite optimal medical therapy may benefit from powerful muscle relaxants, including BoNT (Wijemanne and Jankovic, 2015). In one single-arm, open-label pilot trial of onaBoNT/A statistically significant improvement in the International RLS Scale was demonstrated 4 weeks after BoNT and there was also improvement in some the secondary outcome measures, including pain (Agarwal et al.,"

[SueJohnson]

I have this in my notes Botox injections at the applied dose can reduce the severity of symptoms in RLS up to 6 weeks. Moreover, the quality of life of the RLS patient can be improved for up to 6 weeks post-injection, and pain and discomfort diminished for 4 weeks." according to a placebo controlled study. Injections were into the tibialis anterior, gastrocnemius, and hamstring muscle each side.

Source: neurologylive.com/view/botu... and sciencedirect.com/science/a... which sites a number of articles

[Retiredlady in reply to SueJohnson]

But my RLS always affects one side of my body…head, arm hand and leg together so where on earth would I have Botox injection??

[fritzb43 in reply to SueJohnson]

You'd be MUCH better off maintaining sufficient iron *storage*.

[SueJohnson in reply to fritzb43]

I don't think you meant this reply for me.

[HipHop1972]

it’s a start and mighty oaks grow from little acorns. Thanks for sharing Joolsg

HipHop1972

[Simkin]

Hopefully we ate moving forward. Thanks Joolsg.

[Oregonmike]

Interesting read. I wonder if something similar to BotulinumA is the answer. Just figuring out the injection site and dosage i suppose.

I can’t think of a more sinister disease/syndrome than one where 2 people could have identical bloodwork,same age, etc. 1 has RLS and 1 doesn’t. A disease where the clinician looks at the patient and says,”There’s nothing wrong with you”. I hope and pray for all who suffer. Many in silence.

Thank you for all you do here Jools.

[fritzb43 in reply to Oregonmike]

Nearly ALL doctors/clinicians/"consultants" know ZERO about RLS. Keep that in mind when you go to see them.