Daridorexant

[Caravan24]

Had rls since childhood but not labelled then. I have been on alternative roprinole and neupro for many years, also gabapentin up to 1200mg. Over last three months managed to wean off everything as I felt augmentation was starting. Feelings mire intense and earlier. Paid for private UK neurologist but was completely hopeless. Just told me to take mire and more!!!Problem is if I don't get straight to sleep, whi h is mist nights, I am awake with rls for at least 3 hours then when it finally reduces I'm too stressed to sleep. I wondered if anyone had experience of Daridorexant as I have found couple of research papers which suggests it is beneficial for rls and plmd

[Joolsg]

Your first step should be raising serum ferritin above 100ųg, preferably 200ųg/L via iron pills/infusions.Your experience with the UK neurologist is common. There are only around 3 or 4 in the whole UK who know more than the basics.

If you paid privately and he advised increasing a dopamine agonist, I suggest you demand your money back as his advice was negligent and outdated.

Daridorexant is a new sleeping pill. It's not been trialled for RLS. Most sleeping pills will not help RLS, but they are used to treat insomnia caused by some RLS meds. However, one member has reported it has helped her RLS.

healthunlocked.com/rlsuk/po...

If raising serum ferritin above 200ųg/L doesn't resolve your RLS, and replacing trigger meds ( anti depressants, sedating anti histamines, statins, beta blockers, PPI meds) then you will need meds.

Gabapentin does NOT stop RLS if you're still on Pramipexole or Rotigitone or Ropinirole.

So, you could try Gabapentin or pregabalin again now. Average dose and timings are all set out on RLS UK website. If Gabapentin /pregabalin don't allow 7 hours sleep, then you'll need to switch to a low dose, long half life opioid.

rls-uk.org/medical-treatments

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

It's basically just a sleeping pill and very expensive and unlikely to help with your RLS. There are other cheaper ones, but again unlikely to help with your RLS.

Were you on gabapentin at the same time as when you were on ropinirole or neupro? If so it wouldn't help much. If not did you give it 3 or more weeks to work? If so and you had side effects that you couldn't put up with, did you give it at least a month to reduce so you could stand it? If so did you try switching to pregabalin?

If you did all of this then your best option is a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals

If you don't want an opioid, then you might want to try dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel.Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[Lacey_]

Hi, I am in the uk and Daridorexant has just become available on the nhs. I am a long time RLS sufferer and am in the process of upping my ferritin levels (early stages - last test was 19!).

I have never used the dopamine drugs which may have a bearing on my now-experience with Daridorexant?

I am trying it as a sleep aid whilst I raise my iron levels - early days yet, only two weeks in - but I am finding it helpful so far - I don’t seem to wake anywhere nearly as often in the night even though I’m pretty sure my RLS is as strong as ever.

I shall continue to keep the forum posted on its helpfulness and in the meantime I’ll take the extra hours of sleep 😴!

[Caravan24]

Oh yes please!! Did you find it difficult to get prescription?

[SleeplessinNC]

I took this medication (Quviviq in the US) for three weeks and it made a very positive impact on my sleep. I felt more rested and also cut awakenings by half. It wasn’t an instant effect but seemed to build over the weeks. Unfortunately, I had to discontinue it due to the cost. There is an assistance program but I did not qualify. I’d go back on Quviviq in an instant. I am sensitive and allergic to so many meds and supplements but I had maybe a mild headache, nothing that would deter me. The headache could have been from sleeping well and laying in one position 💤

I had been on 2 mg of pramipexole for several years along with 3200 of gabapentin at one point, and several years at 2400. I didn’t know what augmentation WAS but I started eating anything until I was sick at night and gained 20 pounds and shopping online at 3 am.. I blamed the pandemic. But my RLS was going nuts. 24/7. The neurologist suggested going up to 3 mg of Pramipexole. I had figured out that it was augmentation by then — Google and I —and no way was I willing to UP the dose. So I embarked on the long painful process of tapering off everything. My RLS and PLMD was dramatic. I questioned whether I really wanted to go through any more. Neuro said I could just taper and quit in a week or two it took months. I am not myself two years later

I’m pointing that out because I tried Quviviq after many months being off all medications. Everyone is different. And we all could have varying degrees of damage to our dopamine receptors. I was also taking iron infusion and tried the Q at a time my legs were finally calming a bit so maybe that’s why it felt like a lifeline to me. It’s worth a try. My cost was $550 a month so I was buying 7 pills at a time as I could afford. And it was worth it —working for relentless insomnia and 5/10 RLS and PLMD.

You are not alone. I wish I had this support forum during those challenges because they have CORRECT info about critical timing and dosing of these meds. I never had that kind of specific guidance from my neurologist and it could have made all the difference. We will never know because I wouldn’t go down that road again. I wish you the best and message me any time with questions.

[SueJohnson in reply to SleeplessinNC]

I use lunesta because of another problem and it works great for me and it is inexpensive especially if you use GoodRx. Cheaper than my insurance.

[Lacey_]

Hi, I have been taking it for five weeks now with remarkably good results. I am not taking anything else other than iron supplements as I am trying to get my ferritin levels up to 100+. Also I have not previously used dopamine agonists and some of the chats on here suggest that may help with a good result from Daridorexant. Not sure how long it will carry on for and I do feel a bit groggy sometimes but for now I feel like I am getting loads more sleep than before. I know my RLS is still there but it isn’t waking me up nor is it keeping me awake. Fingers crossed! I get it on nhs prescription now after several chats with my GP who had little knowledge and even less interest????

[Caravan24 in reply to Lacey_]

Thanks for your reply. My doctor is very supportive but needs to get permission to give me this as not available in my area (nhs). Waiting to hear!! I think if I could get to sleep before rls starts I could cope. I lie waiting for it to start then spend next 3 hours moving legs!!!. I also have plmd which jolts me awake when I do sleep

[Lacey_ in reply to Caravan24]

Hi, I’m in Worcestershire and it took a while for this area to authorise prescribing - they required that the patient had tried CBT first which obviously doesn’t have any bearing on RLS. The NHS has now rolled out a virtual CBT platform which seemed to enable my GP to then prescribe the meds, even though I wasn’t using the CBT? Whilst I was waiting for a prescription on the NHS I did buy a private prescription for £90 for 30 tablets from a pharmacy in Bradford. I also get PMD during the night and so far the meds still work. Let me know if I can tell you anything else …?

[Caravan24 in reply to Lacey_]

Thanks for reply. I did cbt before I realised the problem wasn't insomnia but moving legs!!! I'm waiting for a decision but can I appeal? How long did it take you?Could you send me pharmacy details please

[Lacey_ in reply to Caravan24]

I don’t know about appealing as I didn’t have to do that in the end? May be worth contacting your local trust’s prescribing body - that was how I discovered when it became available on the nhs - they were helpful. I bought my prescription off this company ..

prescriptiondoctor.com/adl/...

[Caravan24 in reply to Lacey_]

Ordered some privately thanks for link. Can I ask if you had any side effects and do you take it with any other rls medication. Does it stop rls

[Lacey_ in reply to Caravan24]

I don’t currently take any RLS meds and only previously took Amitryptilene which probably hindered and didn’t help! I am currently just taking iron supps to try and get my ferritin levels up. There are one or two meds that work against it (your leaflet will explain when you get it) but the main issue is one of extra sedation, which seems to be the main side effect? I can’t tell whether or not it helps (as in reduces) RLS but it just helps me sleep through most of the night. Good luck with it when you get your supply.