Quviviq or daridorexant: Just started a... - Restless Legs Syn...

Restless Legs Syndrome

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Quviviq or daridorexant

DocCookie profile image
13 Replies

Just started a few days ago on Quviviq but it was like an act of congress to obtain it. I had a great coupon that could have gotten me a zero copay, but because I have a Medicare plan I could not use the coupon. It took several tries by my doc to get me the medication and my copay was $95. But it worked really good so far. Better than anything else I have tried. Minimal side effects and it is non addictive in contrast to ambient or other benzodiazepines. It is actually a new class of drugs called a "dual orexin receptor antagonist [DORAS]" and it worked well for me.

I have RLS and insomnia and it helped both. I just am hoping that it continues to work. I slept so good and my RLS was inactive. I will keep you all posted. The biggest problem is the copay and big Pharma will continue to milk that one. But there is a site: quviviq.com/support. You can get the discount on any non government type of health insurance. I will keep you posted on if it continues to work for me.

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13 Replies
SueJohnson profile image
SueJohnson

That's great that it is helping. Sorry it is so expensive. Did you try other less expensive ones like lunesta?

DocCookie profile image
DocCookie in reply toSueJohnson

Yes Sue. I’ve tried so many and some just didn’t agree with me. Thanks for all your help

Joolsg profile image
Joolsg

Delighted you've found something that helps.I don't understand the US healthcare system, but hope you can continue to afford it.

amrob123 profile image
amrob123

Wow! That's great it helps both RLS and sleep. Hopefully it continues to work. Thanks for sharing, and keep us updated?

Caravan24 profile image
Caravan24

I have also found this to work really well for rls and plmd. It stops all symptoms within 30 minutes. My problem is that in UK, although approved by nice, my GP is unable to prescribe it so am having to buy privately. Which I can't really afford

amrob123 profile image
amrob123

Apparently it's currently available in the US, parts of Europe and Asia Pacific but not Australia.

Lacey_ profile image
Lacey_

I’ve been taking it (in the uk on prescription thankfully) for two months now with a good results for RLS. I started on 50mg and have reduced to 25mg which is nearly as good for me - just am frightened it will get less effective over time so am using smallest dose I can get away with for as long as …. 🤞? Hope it continues to help you.

Drls profile image
Drls

hello I haven’t heard of this before - has anyone in the uk got any information, how easy is it to get and also how easy is it to try if you are already on other medication?

I take pregabalin and buprenorohine at the moment not working at all - am up all night every night - so any information would be helpful

Lacey_ profile image
Lacey_ in reply toDrls

There has been a small trial …

pubmed.ncbi.nlm.nih.gov/382....

NICE recommends that users should have tried CBT first so I had to get my GP to agree that CBT wouldn’t help RLS! I don’t take anything else for RLS and haven’t previously and some people on here suggest that may be a factor in its effectiveness? It doesn’t appear to have many contra indications if you google Quivivic or Daridorexant. Worth a chat with your GP I would say?

DocCookie profile image
DocCookie in reply toLacey_

Hi Lacey, Yes, my sleep specialist told me that the insurance required me to take 3 other medications prior to prescribing it. I had to try a few others before he could prescribe the Quvivic. So glad to hear that it is working for you too. I too am already worried that the effectiveness will wane, but for now it is working well.

amrob123 profile image
amrob123 in reply toLacey_

Thanks very much for this link. I note that the trial is of suvorexant (as opposed to daridorexant) however they are both orexin receptor antagonists so it maywell be that outcomes would be similar. I plan on trying suvorexant as I know that's available in Australia .

SleeplessinNC profile image
SleeplessinNC

I also tried Quviviq for three weeks with great results. I too have Medicare and ended up going directly to BIG PHARMA for their assistance program but the best price where I live was just over $500 per month and that’s not sustainable for me so I had to stop.

Please do keep us posted. I have often wondered if it might resolve my insomnia in a few months and then I might taper off. Like a Quviviq reset. I can’t second mortgage the house to pay those ongoing Rx costs but I could swing it for a few months. I’m curious to see your progress over time. Cheers.

DocCookie profile image
DocCookie in reply toSleeplessinNC

That is a shame that they charged you that much for something that was helping you. I do have a supplemental Medicare insurance (SCAN) that perhaps made the cost a little better at $95. Thanks for letting me know that it worked for you for three weeks. I am only on my first week and so far it has been working well. It is really a shame that the pharmaceutical company could not help you. At some point when the patent runs out, it will be available in generic form, but until then...Thanks for your response.

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