Daridexorant / quvuviq and RLS

[Lacey_]

Just wondering if anyone else has experience of this sleep aid and RLS? I have bought (not available in my region on NHS yet) a month’s supply of 50mg tablets and ….. I am sleeping normally!!!! It is a new drug to the UK but tried and tested in USA I believe? Apparently minimal side effects. I have been taking it for a week now with great results, so am hopeful it will be a real help. I wake to use the loo and am aware that I am experiencing RLS or PLM but I am then able to go back to sleep within minutes of being back in bed, so the RLS is not waking me nor is it keeping me awake. I am taking iron to raise my ferritin level above 19 (!) and didn’t want to take anything else such as gabapentin until I had ruled out whether low iron is the cause of the problem for me. Hopefully this sleep aid will help get me through this process. There has been a small study ..

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

I would be interested to know if anyone else has experience with this medication - good or bad? May be helpful to others?

[Lacey_]

sorry that should read Daridorexant!

[ChrisColumbus]

NICE guidance:

"Daridorexant (QUVIVIQ) is available on the NHS. It is a possible treatment for insomnia in adults:

who have had symptoms for 3 nights or more per week for at least 3 months, and whose daytime functioning is considerably affected

only if cognitive behavioural therapy for insomnia has not worked, or if it is unsuitable or not available.

If the insomnia does not improve enough, daridorexant may be stopped after 3 months. If treatment is continued after 3 months, there should be regular checks to make sure it is still working.

If you are not eligible for daridorexant but are already having it, you should be able to continue until you and your doctor decide when best to stop."

There are a few cautions etc in the BNF:

bnf.nice.org.uk/drugs/darid...

[ChrisColumbus]

I see that a US member wrote: 'Quviviq (only thing that worked somewhat but unaffordable for me and I don’t qualify for aid)'

[SueJohnson]

It's great that it works for you but very expensive. In the US the average cost is $637/month or $21 a night and drugs.com user ratings was 4.3 out of 10 although only 122 ratings Whereas trazodone's rating was 6.3 with 1409 users.

[Lacey_ in reply to SueJohnson]

That’s all interesting info thanks, as ever, guys. Currently, it is costing me £3 per tablet in UK and I will see how it goes, it is already nhs prescribed in some parts of the country.

[Joolsg]

Fantastic news. The study reports that it works better on those who have not taken dopamine agonists. Another reason these drugs should be banned.No wonder you have RLS with serum ferritin of 19!

Fingers crossed that raising iron levels resolves your RLS.

I wonder how many of us would be med and RLS free if our initial RLS had been treated with iron???

[LineVec in reply to Joolsg]

But you should acknowledge that any variant of sleeping pills should only be taken for 3 months max.!

[ChrisColumbus in reply to LineVec]

While a 3 month maximum is recommended for many treatments it is not a hard-and-fast absolute rule for all. Long term insomnia is recognised as in some cases needing long term treatment.

Your profile hasn't been completed to show where you are (or other details) but UK guidance at least is that daridorexant treatment duration should - as with all insomnia treatments - be as short as possible, but that "the need for continued treatment should be assessed within 3 months of starting daridorexant and periodically regularly reviewed thereafter".

International clinical trials with daridorexant were extended up to 12 months for some participants.

[Lacey_]

I know that is sound advice however it is a balance for me between getting any sleep at all balanced against any long term effects of the medication? But obviously it’s to be borne in mind, thank you

[SleeplessinNC]

I took Quviviq for three weeks and it was working similarly for insomnia without much RLS breakthrough during the night. It is not covered by my insurance and I didn’t qualify for their financial assistance so I had to stop taking it because of the cost; $500 a month. I am also on iron infusion. I recently started a trial of lacosamide and it is working very well for the RLS but not helping my insomnia :/ I wish you all the best. It sounds like you could be on the right track.