Has anyone taking Baricitinib experienced bad insomnia

[Dawns66]

Ive been on and off this medication for the past 12 months now due to either infection or low white cell count.On restarting it after 4 weeks off it im finding it difficult to sleep,some nights im only getting two hrs...i just cannot drop off till 3 or sometimes 4oclock and then ill wake after just 2 hours.Ive tried changing the timed i take it but its made no difference and my consultant has said its not the medication as its not a known side effect and no other patient has complained of this symptom..ive slept perfectly well up until now and cant think of anything else that would cause it.

[Madmusiclover]

Hi Dawns66, I’ve been on Baricitinib for a year or so. No I’ve not experienced insomnia.

[Leics]

Yeah I did find that my sleep patterns were affected by baricitinib not to the extent it’s affecting you but I could only manage about 5-6 hours sleep. I did try to take the baricitinib either early in the morning or late at night I did find taking it earlier helped more. As I didn’t have any side effects it was fine to take in the morning with lots of water. Have to say it stopped being effective after having to stop it for a chest infection which kept coming back for six months so I’ve been taken off it. Shame because whilst I was infection free and to start with it was a game changer. Hope things settle soon I also found that having caffeine free tea or redbush tea helped so no caffeine after about 6pm if you drink it at all.

[wishbone in reply to Leics]

Difficult to say as my sleep pattern was not good before I started taking baricitinib approx 18 months ago. I haven't give it a thought until now, but it could have got a bit worse since I've been taking baricitinib.

[Hidden in reply to Leics]

Leics I'm having infections on Baricitinib too. Been on off it since April 😔

[Leics in reply to Hidden]

Yeah I was fine with baricitinib but I was taking prophylactic antibiotics at the same time for almost a year because of my immune system issues. Unfortunately for me antibiotics and baricitinib just don’t mix well I lost hair was having sleep issues although taking a low dose antibiotic knocked me out, had face numbness etc etc but I always have issues with antibiotics lol just lucky that way. I was doing pretty well despite that for almost a year on 2mg of baricitinib no infections at all. However that was until October last year then I made the mistake of increasing dose to 4mg one infection after another not sure if one of them was Covid either I coughed for six months straight and didn’t think it would ever stop. So apart from the flare from hell which is now being treated by steroids I haven’t had Baricitinib since last year and I’m not allowed to take it again. My sleep problems and infections have gone though at long last. Hope yours goes away and you can continue with the treatment if it works for you. Like I said not having a working immune system is probably more to do with it than anything.

[Hidden in reply to Leics]

Poor you, sounds like you've had an awful time. I'm going to contact rheumy as my infection is back for the 3rd time since starting baricitinib in April. Maybe I'd be better on 2mg?

What drug are you going to go on now?

[Leics in reply to Hidden]

Well if it’s ever safe enough for me to see the consultant face to face then he’s talking about Enbrel. Not sure if it’s going to be suitable or not because of cancer before even though it was 20 years ago and pre RA, and whether I would need prophylactic antibiotics again. As my immune system is severely depleted this was the reason I only had 2mg of baricitinib I was fab for a year no infections whatsoever but I was taking antibiotics too although in very low dose. My problems started when I couldn’t tolerate taking antibiotics at the same time and although 2mg of baricitinib worked quite well for me I could have been better so I took the risk and went onto 4mg big mistake in hindsight. I had one infection after another severe chest infection, throat infection sinus infection just got everything going and it went straight to my chest every time. So for the foreseeable I’m having prednisone on 20mg atm but will be tapering over the next 10 weeks so fingers crossed there’s a plan at some point. Hope you sort your dosage and recurring infection out and you can carry on with baricitinib for the future if it works for you.

[Hidden in reply to Leics]

Awh thank you so much Leics.

I hope you too can find a drug that works and is OK for you to take. Take care Kiki x

[Leics in reply to Hidden]

Thanks Kikideelili, hope you feel better soon. Unfortunately it’s just difficult to find options for me but not impossible so 🤞I will get there eventually.

[Hidden]

Sorry to hear about your insomnia. I take baricitinib and honestly at the mo I'm sleeping really well.

Thi gs you can do for insomnia are:

No caffeine after noon

Drink lots of water. I drink 3L a day

Get out in the fresh air daily.

Take magnesium citrate at bedtime

No phones or tablets or TV 90 mins before bed.

Sound like your circadian rhythms are not getting what they need.

Your gp can maybe refer you to a sleep clinic if you've tried all the above things and they don't work.

I'm a person that needs lots of sleep I couldn't function on just 2 hours.

Take care Kiki