Hi..I’m on my 4th week of sulfasalazine, and just wondered if anyone else experienced insomnia from this drug and how long it lasted?
My sleep is terrible atm, waking 3 or 4 times and getting about 4/5 hours of broken sleep. I was on methotrexate previously but came off due to the fatigue but now slightly regretting it, as at least I slept.
The lack of sleep is making everything so hard.. I also recently lost my dog which made my RA flare, so appreciate the lack of sleep may be other factors and not the drugs.
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Sapphire1701
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I was diagnosed last August and have since started MTX 20mg and 5 Sulphasalazine each day. I'll also be starting Amgevita in a couple of weeks. Since May last year, I think I've had maybe one or two good nights sleep. By a good sleep, I mean about 7 hours at least without waking up. I've sort of just got used to having a broken sleep every night, so I can definitely relate to what you're saying. The pain is very frustrating because I am always uncomfortable in bed at night as a result. I always have to get up to pee at least once a night, quite often it's twice or thrice!
The rheumatology nurse said that I could ask the GP for sleeping tablets, but probably the best course of action will be the Amgevita, to try and get some direct control over the disease, because I'm taking loads of tablets. I need to take Omeprazole as well as I can get bad acid at night which doesn't help sleep.
I've found that taking painkllers at the right time helps so that I can at least get 4 or 5 hours good sleep.
For me, the pain and discomfort is the main thing which doesn't help. I'm also going to get a new mattress because I think the one I have is too soft and not helping.
I'm hoping once I find a treatment which gets some control over RA, then the sleep will improve dramatically.
Hello. It is the first time I have ever replied to anyone on here but I read your posts every day and find them very helpful.
I was diagnosed with seronegative RA in October 2017 and my rheumatologist’s first drug of choice was sulfersalazine 2 in the morning and 2 in the evening. The drug was very effective for me but, like you I was awake on and off all night and most nights would get up to read for about an hourto break the pattern of restlessness. It wasn’t until I was taken off it, as it wasn’t being as effective as it should that I realised it was the sulfersalazine that had been causing the problem! Since then I suffered a year on methotrexate which did not work but only made me feel dreadfully ill. Leflunomide, when I lost 5lbs in a week due to severe diarrhoea. I am now on Benepali, which is great. Again my rheumatologist felt I should add in a drug to protect against reacting to Benepali so I said I would go back on sulfersalazine on a reduced dose, one twice a day. Yes, the insomnia returned so I asked to stop them. Such a shame as they were effective in treating the disease but you need your sleep! So, my advice would be keep monitoring it as your insomnia may have a different cause but be prepared to ask for a review if things don’t change.
In the side effects it does state that sulfersalazine can cause insomnia but it is rare.
I haven’t had more than 4 hrs unbroken sleep since I suddenly developed RA a year ago. Not sure if sulphasalazine is making it worse but now waking is coupled with the urge to pee.
I’m the same! Need to pee during the night now I’ve been on sulfasalazine 2 weeks. Although I have managed to ignore it and get back to sleep sometimes this week.
I haven't found that any of my RA drugs (Methotrexate, Hydroxychloroquin and Sulphasalzine) have affected my sleep. I think that it's more likely to be the RA itself or other things. So sorry to hear about your dog 😢💐
thank you all for replying.. and yes I think the lack of sleep is probably not the medication.. this journey is just such a difficult one, and yes losing my dog has pretty much broken me and made my RA so much worse..
I understand completely, I’d lost my husband in Aug 18 and I started with Ra symptoms (unbeknown to me) about 9 months later then my dog died just after New Year 2020 and then the RA got much worse.
I got put on Sulfasalazine in Jan 2021, I struggled at first with it as I got tinnitus and struggled to sleep, but that eased in time. I would give it a bit longer till your body is used to the full dose and hopefully it will get better. I am still taking it, if anything I’d say it makes me feel a bit depressed? None of the dmards are working at the moment, as I’ve been on hydroxychloroquine and methotrexate as well but having a massive flare and hoping to swap to a biologic 🤞. Still miss my boys ♥️ terribly. Losing a dog is heartbreaking take care of yourself
Bless you, that’s quite a story.. I’m so sorry for your losses. Trying to deal with those things on there own would be incredibly tough, then add in RA too.. I can’t imagine how difficult that has been for you.
Yes losing my dog has just hit me really hard..she was only young, but health complications led to aggression and I had to make an agonising choice. I’d already lost my previous dog also at a young age due to sudden illness.. my dogs have been my life, constant companions, and the loneliness without them feels unbearable just now..
I’m actually going to request to go back on methotrexate, it worked for me, though the side effects were tough.. but I am working much reduced hours and have less pressure in my life than before, so will see if I can give them another go. My knees have got so stiff again doing anything is agony.. on MTX, it all went away..
but all this is so hard, I know I need to have a positive mindset, but I also need to grieve in my way, which others don’t seem to understand.. my life has been full of trauma, which I’m sure many of us share and is hugely linked to RA..
So sorry to hear that you're struggling. Is there someone you can speak to? Insomnia is dreadful - there's a good reason why sleep deprivation is used as a form of torture!
I struggled with it during peri-menopause but luckily HRT helped. I also had a hypnotherapy recording which helped me to drop off.
Later, the problem returned (along with anxiety) after some family issues and my GP persuaded me to try Mirtazapine which was a life saver. I'm still on a very low dose - too low to have much effect on mood (which, thankfully, I no longer need) but it still helps me to drop off easily, even when woken by night sweats or the need to wee. I haven't considered coming off it as I feel SOO much better when I sleep well.
Maybe you could talk to your GP about something to help you to break the cycle and get you back on track?
I had odd reaction to sulphasalazine, extreme vivid dreams and then some panic attacks in the day (I’d never experienced these before). I asked to change drug
Mmmm I started sulfasalazine 10 days ago. My sleep is now rubbish. I take it at 6pm incase it makes me feel sick. Never connected my recurring bad sleep to it. But I'm taking amitriptyline too at night and before I began sulfasalazine I slept a lot better. When do you take it?So sorry about your furry friend. Xxx
I’m 4 weeks in, so take 2 in the morning, 2 in the evening.. my sleep has always been a bit on and off, but I’m now waking every 2 hours..
I think I may ask to go back on MTX, it worked well for the RA but knocked me out for about 2 days a week, and caused bouts of cystic acne.
But I think am just very depressed / grieving right now.. my life has changed so much since diagnosis 6 months ago. from working full time, to barely managing 2 days a week. Then losing my dog and I just want to shut the curtains and hide away.
It is tough. I'm on my 3rd DMARD. Diagnosed in 2021. MTX injections gave gastritis and Leflunomide chronic diarrhoea for a month. As many of the people on here that's had ra for a long time say it's hard but once they get on the right meds it's better. We will get there eventually. Please post on here when you need help or just to vent. The people on here understand and help so much. Sending hugs. X 🌹
yes it certainly is tough.. a year ago I was working full time, about to re-train as a nurse, going to the gym, generally fit & happy.. then covid hit me, then RA. Then my dog became super dog on dog aggressive and I just broke..
I’ve heard others say once balanced on meds, life gets better. I know I’m just in a rough patch right now, so scared and uncertain of any future.. I live alone with teenage daughter who is living her own life.. and it’s a very tough and lonely journey.
You do feel lonely. I was laying a patio 2months before RA reared its ugly head. Always doing something. Then wham. At the mo I have a right leg problem too, hip osteoarthritis plus trapped nerves. Hubby is doing everything. It must be so hard for you. You will be grieving not only for your dog but also for you old life and the way you were before RA so have a double whammy at the moment.I know how it feels to loose a pet they are family after all. That will take time too. Always here if you want to chat. X
thank you.. and yes grief on both counts.. and very few people understand either (talking on here is great though). One recent comment from a work colleague, ‘well it’s not like you have cancer’… to which I burst into tears.
So many people don’t understand so having this space is so comforting x
I say to people who say that "you have a good chance of cancer being cured RA can only be controlled, hopefully'. Sounds harsh and I've had family and good friends with cancer. They are all still here thankfully. Not belittling cancer by the way. You have to have RA to understand. That's why this site is a godsend. X
I had same problem when first on Sulfasalazine. Thankfully the insomnia is no longer happening and back to as soon as my head hits the pillow I'm asleep. Hope your experience is soon improved for you.
Can you remember how long it lasted Ernie? I go up to 2 a day on Wednesday and it takes me ages to get to sleep and last night I woke every 2 hours on 1 a day. I'm shattered. 🥱
I actually spoke to my GP in the end and reduced my dose! After that everything good with sleep, and haven't had any flare ups luckily. I think it's a hit and miss drug on dosage. What one person needs to stabilise is different from another. Have a word with your GP or if you can access your rheumy team do that.No sleep isn't good as we get more tense then vicious circle.
Hang in there and let's hope some warmer weather comes soon.
So sorry to read about your dog, since covid everything seems to be affected mentally, even our beloved fur babies.
Thank you.. yes I will speak to my rheumy team tomorrow, they are really good, which helps…
And thank you for your words re my dog, yes she was a true lockdown pup..but none of us knew then the devastating impact that would have on so many aspects of life.. and still does..
Hi sapphire. Just wondering how you are getting on? My sleep is dreadful I'm a zombie! I.m stopping sulfasalazine today to see if my sleep improves I cannot go on like this. Then I'll ring my Rheumy if it's definitely the sulfasalazine stoppinge sleeping. It's got to be nothing else has changed.
Hi.. I’m sorry to hear you’re struggling with sleep too, it just makes everything harder. I had to go in to rheumatology this week due to a flare and an unexplained swelling below my knee, and I’m now off sulfasalazine, and started back on methotrexate - which although am sleeping a little better, has knocked me out for the last 2 days.
I am terrible with medication though and as soon as I read about a side effect, I then somehow get it. So am sure there’s a psychological link..
If your rheumatology team are supportive (mine are amazing which helps) hopefully they can help you and the direction to go next. Lack of sleep is just torture… so I completely feel for you.
Thank you sapphire. I didn't read the side affects on purpose for the sulfasalazine when I got them. I just took them...until I stopped sleeping and there it was... it can cause insomnia. I'll miss it for a couple of days and try again if I start to sleep better. Then if I stop sleeping when I take them again I'll know for sure. X
I hope you start to sleep better soon..there’s nothing worse. I am sleeping better since I’m off it, but then it could just have been in my head. But I wish you the best x
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