A small journey... and a tip to share

[ns01]

Hello, my first time to post here. I am a 55y old male, doing rounds with various consultants to see why I have random joint pains primarily. I also have numbness and cold feeling in my extremities. My ANA and dsDNA are the ones that the Neuro picked up on and has referred me to Rheumatology as he thinks I have mCTD (lupus plus other presents). Anyway that trip is still to come.

As part of my flare, I also lost the ability to fall and stay asleep. Initially my GP prescribed me Zopiclone which did the trick but that was for a total of 20 tablets. I practiced good sleep hygiene but was not really getting anywhere (around 3-4 hr every other day). After doing some research I found that there is a NICE approved insomnia drug (> 3month lack of sleep) called Daridorexant which is recommended for longer term use. I asked my GP for it and he was kind enough to push for it and got me a prescription.

I have been using it for just over 3 weeks and it has worked somewhat for me in that I fall asleep and do get some sleep and mainly don't end up panicking about not having slept. I feel the sleep is not a really deep refreshing one but every little helps at this stage for me.

So that is the tip that I wanted to share - please do your own research and don't be surprised if your GP has not heard of it - NICE approved in Sept 23' and also don't be surprised if your pharmacy can't get it - you may have to shop around.

Other than that, I have been reading posts here and trying to get as much info as I can for the upcoming Rheumy appointment - and getting used to the fact that life has changed forever 😠 but got to keep on trucking.

[CecilyParsley]

Hi I read your post and got really excited. I have just gone 34 hours without any sleep at all. It is soul destroying and I felt so unwell by last night. It is not every night it happens although I never get good, refreshing sleep but I can just about function on on 4 hours. However when I looked at the drug interactions with Daridorexant I am gutted I am on three medications that should not be taken with it 😞. I am very pleased that it works for you though xx

[Paprika60]

Hi, I read your post with interest. I have had insomnia issue (caused by Prednisolone) for nearly 20 years and read about this new drug the moment an article showed up. I contacted my GP right away but it took extra six months for it to become available after NHS allowed it. When finally available I was so excited (relieved) as it was not supposed to have side effects. But after three or four nights, I could tell my brain function was not the same. Very hard to explain in what way but my logical side didn't function quickly... So I had to stop. I had to go back to my other sleep aids (magnesium supplement and L-theanine, red wine). When horribly bad, I still take quarter size of Zopiclone as it is better than not sleeping. So everybody reacts differently. But you are kind to share the news. Take care!

[Suvi8901]

Some high powered scientific info on DORIDOREXANT, a very new drug with as yet no info on its potential addictivenesss (unlike zopiclone), In the US it’s a schedule 4 controlled substance:

en.wikipedia.org/wiki/Darid...

[Suvi8901]

Isn’t it better to stay off the “sleepers”, many of which are addictive, toxic and/or have serious adverse reactions with other drugs?👆🧐

Tire oneself out through all sorts of exercise eg housework, gardening, laundry, cleaning, DIYing, walking, shopping, cycling, exercising on a treadmill, gym work etc etc etc etc and fall asleep naturally?🤣🥹💤😴

ANY of the above always tires me out!🤣 despite suffering chronic fatigue.😳