Baricitinib side effects?

[sjhewitt42]

Happy Sunday to everyone, I hope it is a day of rest for you all.

I’ve been taking Baricitinib now for nearly 3 weeks and I realise they take a while for your body to get used to them but I have had a headache every day and feel waves of nausea/dizziness. It’s not enough to stop me eating 😁 but I just wondered if anyone else experienced this?? And the tiredness and brain fog is absolutely exhausting. I’m hoping to hear that this passes and I will feel ok once the tablets kick in! I am also very moody and tearful almost hormonal which is unlike me as I’m usual quite upbeat and positive unless the pain is unmanageable.

Would appreciate any feedback.

Sarah xxx

[wishbone]

Yep, sure have!... I had frequent headaches during the first few weeks. Informed rheumy who told me to stop taking it for a week, which I duly did. As I recall I had just the one headache soon after restarting and nil since. Also noticed much increased fatigue & tiredness, especially during the first few months as it doesn't seem quite so bad of late. I mentioned this to the rheumy nurse during a recent appointment. She didn't say much but wrote it down in what I assume was her report. My memory also seems to have got significantly worse since starting baricitinib, but I forgot to mention this to her which seems to prove a point!

Should add that I only take 2mg.

edit...I know we are all different, but baricitinib started working for me in just a couple of days.

[sjhewitt42 in reply to wishbone]

Hi Wishbone,

Thanks for your reply. Interesting about headaches and fatigue. I think I will just try and get on with it although some days I feel positively hungover without the fun!! The brain fog is impacting my memory too.. I went for an interview on Thursday for a part time job which would have meant a lot less hours and I looked a right idiot because I couldn’t think straight. Needless to say I didn’t get it because they said I wouldn’t be capable of confrontation from staff. They clearly didn’t get me from my crap interview 😂

I can’t say it’s working like a miracle drug but I am in a lot less pain than before Xmas so fingers crossed. Sarah xx

[wishbone in reply to sjhewitt42]

That's not good about the interview. I can well understand how you couldn't think straight, especially with the added pressure of an interview.

It's no miracle drug for me neither, but is more effective than hydroxy I was previously taking and I'm grateful for that! I was taking both meds for a month or two but stopped the hydroxy due to stomach issues and have noticed a difference with my RA since doing so. I'm hoping that I might be able to go back on hydroxy one day as both meds worked well together.

[sjhewitt42 in reply to wishbone]

Hi let’s hope so. I’m also taking Azathioprine as I can’t tolerate anything else. However, it says on the leaflet that comes with Baricitinib that you shouldn’t take with Azathioprine so I’ve stopped it and am waiting for a call back from hospital. I can’t think straight at all at the moment and my emotions are everywhere. I’m normally really positive and pretty laid back so not sure if it’s the new meds too.

Hope you’re feeling ok today. x

[wishbone in reply to sjhewitt42]

I can see it on the leaflet..that doesn't look good does it! I presume you were already taking the azathioprine? I also read that 2mg, which I'm taking, is the recommended dose for baricitinib, yet most people seem to be prescribed 4mg.

I hope they get to the bottom of things for you sj. Interested to know how you get on?

[sjhewitt42 in reply to wishbone]

Yes I was already taking it but only for couple of months. The nurse that told me to take both is not reliable at all. She gave me wrong dose info for Azathioprine and was going to give me RTX infusion instead of the Toci prescribed in the past!!! She was also reading off her notes last time I saw her!! 😏 I’m on 4mg too! I’ll let you know if they ever call me back. Sarah x

[wishbone in reply to sjhewitt42]

Jeepers! anyone can make a mistake but that's stretching things a bit! I wonder if it's anything to do with increasing staff shortages in the NHS(?) My rheumy retired last august and has yet to be replaced. I'm on 2mg because I have infection issues. The rheumy nurse recently asked if I wanted to go increase it to 4mg as my RA is not that great, but I am getting by on 2mg so refused the offer as I don't want to push my luck regarding infections.

[sjhewitt42 in reply to wishbone]

Oh trust me that’s nothing it’s been one thing after another with hospital and mistakes. I wonder if I took everything the ‘professionals’ said as gospel where I would be!! I can understand why you wouldn’t want to risk the infections after your history with hospitals and infections. I’m wondering why they put me straight onto 4mg. Sarah x

[Banksian in reply to wishbone]

I couldn’t cope with 4mg, walking around like a zombie. Dropped to 2mg which is better for the brain fog. It only helps a bit with the RA, still can’t get off the steroids, but it’s the only med left for me to try.

[wishbone in reply to Banksian]

It does seem to cause brain fog etc. Don't think I have too many options left if it stops working. I'm taking it with strong pain relief and have managed to decrease that a little since starting baricitinib.

Long may it continue to work!........................................................................................

[sjhewitt42 in reply to wishbone]

I was told it’s the end of the road for drugs if this doesn’t work by the not so reliable nurse. It basically has to work! What pain relief are you taking.. I’ve managed to drop the Zomorph and oral morphine back down to Tramadol and to drop it down again to codeine would be brilliant and a good indicator it’s working but I’m not going to push my luck just yet.

[wishbone in reply to sjhewitt42]

Let's hope that nurse is wrong again! Well done dropping your pain relief by that amount! How come you're at the end of the road with meds?

I was taking 300mg of slow release tramadol along with 2000mg of paracetomol, but since starting baracitinib I've managed to cut back to 225mg & 1000mg. Think I must have an addiction problem with tramadol as I've been taking it for a long time and didn't find it easy cutting back...not so much to do with increased pain, but I felt really irritable and short tempered for a couple of weeks. Thankfully things seem a bit better of late.

edit...do you think how you are feeling could be something to do with dropping your pain relief? Coming off opioids can be a problem, as I found out, especially if it's done too quickly.

[sjhewitt42 in reply to wishbone]

Hi

I never really thought about the irritability through reducing pain relief. I guess it could be thinking about it. I did reduce the morphine but by bit but I also find Tramadol can make me a bit snappy or tearful. I haven’t heard it from my consultant that it’s the end of the road for meds but the nurse so I’m not convinced. However, I’ve tried DMARDs with Azathioprine the only one not to make me really ill and 4 biologics which you have to fail before getting Baricitinib. It’s not going to fail, thinking positive. It’s good that you have reduced your meds. When Cimzia was working so well I wasn’t taking any pain relief. I can’t imagine that now!!

[wishbone in reply to sjhewitt42]

Neither was I taking any pain relief for the few months I was on enbrel...think it must have been the one and only time I've been in remission during the 16 years I've had RA. That was approx 4 years ago, and until I started baricitinib 5 months ago those 4 years are best forgotten as it wasn't the happiest time of my life shall we say! Azathioprine was another option for me, though my rheumy preferred baricitinib out of the two as did the immunologist she referred me to.

Opioid withdrawal symptoms can be a real problem for some people. It might be worth reading up on it to see if it relates to you. How you are feeling could even be down to a combination of that and baricitinib. In any case if you don't start to feel better soon then it might be a good idea to see your GP.

[sjhewitt42 in reply to wishbone]

I will certainly read up on it although I must admit I felt better yesterday and today like I can think clearer somehow. I’ve started taking the Baricitinib right before bed and whilst it’s a struggle to get up it clears within an hour or so so I can start to think straight. Thanks for your advice, it’s great to get another point of view of someone who has been through it.

[wishbone in reply to sjhewitt42]

Hope things continue to improve.

take care

[sjhewitt42 in reply to wishbone]

You too x

[sjhewitt42 in reply to Banksian]

That’s interesting about the brain fog. I feel a little better today but I wonder now whether that’s what it is confusing my brain. Lol