Insomnia

[Kazfie]

Hi Everyone just a quick question please . I’ve been taking hydroxychloroquine for my lupus for months now and it’s been great but the insomnia is crazy it doesn’t matter what time of the day I take it I just can’t sleep and it’s getting to the point I want to stop taking it . I’ve tried meditation ,no caffeine everything nothing works . Has anyone else had the same experience ?any hints /tips on what I can do please?

Thanks in advance K

[diane46]

I was like this my consultant gave me amitriptyline i take 75mg really helps

[Kazfie in reply to diane46]

Wow thanks so much ,I already have them for migraines and only use them when I need them I will give them a go I really need some sleep

[diane46 in reply to Kazfie]

Yes i do to but he said they help you sleep to really work for me

[Kazfie in reply to diane46]

Thanks this is great advice I will give it a go.

[svfarmer in reply to Kazfie]

I take 100mg Amitriptyline every night for last 8 years for insomnia x

[Kazfie in reply to svfarmer]

Thanks so much I am going to try and see if they work . I’ve taken one a few hours ago and I’m still wide awake I’m hoping it kicks in soon 🤞🙏

[svfarmer in reply to Kazfie]

I find they only work on an empty stomach - so we have our tea at 5pm then at 8pm I take the amp so by 9.30pm they start to work and they make me feel woozy then I sleep like a baby all night - I usually sleep 12 hours - I know that’s a lot but my body needs it x

[marypw]

I take 20 mg amitriptyline at about 10.30 p.m. every night and have done for years. It definitely helps with sleep. I think insomnia is part of lupus/fibromyalgia, rather than being due to hydroxychloroquine.

[Kazfie in reply to marypw]

Thanks Mary I’m going to give them a whirl . Oh I didn’t realise I thought it was the hydroxychloroquine because I only started having insomnia since I started on the tablets for my lupus .I never had a problem sleeping before how bizarre. I’m so happy with all the advice I’m praying the amitriptyline helps .

[Hoofprints in reply to Kazfie]

Have you considered trying another brand of hydroxychloroquine? Loathe to suggest this if you are not having other bad effects from it, but just wanted to mention it as a possibility if the amitriptyline doesn't work.

I've been on hydroxychloroquine for well over a year and although haven't noticed any link to insomnia, I did experience terrible and immediate mood changes when I took the Bristol brand. I switched to Zentiva and had no such symptoms. Just a thought. Some people are fine on Bristol brand, but not Zentiva, so it's a question of seeing what is best for you.

Good luck 🍀

[Treetop33]

If it's isn't the hydroxy (I've never heard of an issue with that thus far) in general the kind of things people with lupus take are magnesium spray and some of us try melatonin (some say it sets of flares but I've never found that). I've been using a device called Sensate which regulates the vegus nerve (expensive though). Good sleep is essential to disease management, so it's worth working on x

[Kazfie in reply to Treetop33]

Thanks Treetop I am so thankful for everyone’s suggestions on here .I will look sensate I agree it makes flare ups so much worse when you don’t sleep

Thanks again K

[mimiof9]

I take half of my Lorazepam. It's for anxiety and it's a 1mg tab. I don't like taking scripts as prescribed if I can help it but rather as a prn (as needed).

[Kazfie in reply to mimiof9]

Thanks so much ,I’m the same but not sleeping is so tiring so if needs must 😁

[mimiof9 in reply to Kazfie]

A 'normal' person without health issues needs their rest. Factor in, a person with autoimmune, fibromyalgia, CFS? Youzer! That can make a day challenging to get through.

[BeeManShrop]

Hi Kazfie My wife has been taking hydroxy at 300mg/day (200/400) for over 12 months now. She is gradually improving and is now very much better than she was 12 months ago although she still has chest pain and various niggly joint pains especially knees. We do not know whether this is caused by the lupus or the RA (which she has had for about 20 years).Regarding sleep, or the lack of it, she has indeed suffered from it by sleeping very lightly and waking several times in the night, to the point where she would have to get up and walk/stagger around and maybe make a cup of tea. She is very much against taking sleeping tablets. If you do decide to take an additional tablet to help with your sleep I wonder how you will know when you have reached the stage where you do not need them. I cannot see that it can be a good thing to take them as a long term fix. Fortunately, we are both well past retirement age, so a late lie-in or a knap during the day is not a problem. The good news is that after persevering for over 12 months with the hydroxy. she is now sleeping much better and often wakes saying that she has had a good sleep. So there is possibly a light at the ned of the tunnel. We are all of course each following a unique pathway through the lupus maize and we are all different. I can only tell you of our experience but I do hope this helps you in some small way. Whatever, all the best and have a good and happy New Year.

[Kazfie in reply to BeeManShrop]

Hello thanks so much for you’re replying it is really refreshing to hear that your wife is feeling much better . I totally understand where you are coming from I also don’t like taking tablets if I don’t need to I have taken the amitriptyline and it has worked wonders these last few days I didn’t take one last night and again I was staring at the wall at 3am 🙃I have an appointment nxt wk with my consultant hopefully he might be able to direct me down another route . I would like to thanks everyone on this forum I feel so relieved I have found you all . Thanks for all your tips and advice and I wish everyone a lovely New Year

[Maddymay65]

Hi , I too take amitryptilline regularly , good for pain and helps me sleep , I take only 20mg but I think everyone needs a different dose. Good luck ,M x

[Kazfie in reply to Maddymay65]

Thanks so much Maddymay It really does help I’ve just started cutting them in half 🙂I told my doctor and he said if it helps 🙂

[MrsMarigold]

Hi Kazfie. I’ve dealt with insomnia off and on for years. I learned meditation and deep breathing in my twenties from a very wonderful woman from India. I’m now in my 60s and still use the “secret” chant she gave me. This was the beginning of learning to trust my body and relax. It took 10 min a day for months until I became proficient and then 30 min. It was per her instructions to not go over 10 min for a long time as most people get too frustrated. I was extremely blessed to learn privately in early 1980s from a real human. 😀 3 months of classes back then twice a week was only 100.00 US! Anyway, there have been some times in my life despite this, that my organic ways didn’t help enough. Especially with lupus and more physical things causing pain. So I have what I call my “ team” of medications that help. Amitriptilyne did not make me feel so great. Recently I went through a very difficult time and was prescribed restoril (US name) I used it for a week and it helped me get the sleep I desperately needed. Being once a very “ organic” person I’m trying to say I came to understand with these serious illnesses it isOkay to get pharmaceutical help. Just be honest with your Dr. Anxiety can steal your life. Best Regards, Titters

[Kazfie in reply to MrsMarigold]

Hiya thanks for your recommendation that must of been a great experience I love meditation and crystals and also try to visualise before sleeping apparently it makes you sleepy 🙂but my mind is so alert from the medication. I have been trying just to take the amitriptyline only if I can’t sleep and I have a busy day at work the following day 🙃I’ve been cutting them in half so I’m not taking too much 🙂I’ll keep going with the meditation 🧘‍♀️ too fingers crossed it will all settle down soon x