Baricitinib (Olumiant) / high LFT’s

[catgirl1]

I’ve been on this for about 2 months now and was doing really well but now my liver function tests are elevated and I’ve been told to stop taking it. Flaring already 😞 ... anyone else had this ? x

[Shalf]

Hi catgirl, sorry to read this. I'm also on Baracitinib and have been for the last 6 months or so. Are you taking any other drug? What is your Rheumy suggesting now? X

[catgirl1 in reply to Shalf]

Hi Shalf , No I was only taking that..more blood tests on the 4th December and then maybe start taking the 2mg ones if all ok - had steroid injection yesterday so hope that keeps me going 🙏🏼 x

[Shalf in reply to catgirl1]

Ahh ok, so you were on 4 mg? I hope your bloods are ok. Have you had problems with liver before? It's a shame when we find a drug that controls inflammation but gives us side effects, very frustrating. This has been the better drug for me but I do feel I could do with something else too. It's not stopping the inflammation in my hands and wrists especially right side.

[catgirl1 in reply to Shalf]

Yes I have - it seems to coincide with every new treatment 😩....such a shame because it was working brilliantly, I could undo bottles etc without using aids - first time in years!

[Shalf in reply to catgirl1]

Catgirl, if only you could hear my sighs of disappointment and frustration! I know you will be sighing and frustrated too! Thinking of answers for you honey. Thinking what would I do in your shoes. Most probably try everything with the GP and hospital to get on top of the liver issue! It's the thing that's stopping RA drugs from helping you. Maybe done all this already I don't know? But surely the Rheumatologist knows about your other health problems. There has to be a way! Let me know how things progress. Be determined to get every test and care in getting you on the best treatment. Xx

[catgirl1 in reply to Shalf]

Will do 👍🏼 and thank you xx

[wishbone in reply to Shalf]

Been meaning to ask you, do you know how often we are supposed to have our blood tested because we are on baricitinib? I've had mine done twice since I started taking it around 4 months ago.

[Shalf in reply to wishbone]

Hi Wishbone, I have had a blood test around every 4-6 weeks ( at my request may I add) . If they don't contact you for bloods, be sure to ask your GP/Nurse.

[wishbone in reply to Shalf]

I've only had 2 blood tests and that was within the first month or so of starting baricitinib. None for the last 3+ months . I'll be asking my rheumy when I see her on tuesday.

Thanks Shalf

[Shalf in reply to wishbone]

No problem. If you remain unsatisfied with Rheumy nurse then ask your GP practice nurse. Can't see why Rheumy nurse wouldn't check your bloods though! What a carry on eh! We ( as patients) seem to do most of the work!)

[wishbone in reply to Shalf]

Seeing that catgirl's rheumy decided to stop her baricitinib because of liver issues, then it does seem a bit strange why our bloods are not monitored as is the case when on methotrexate.

[Shalf in reply to wishbone]

As I understand it, I think catgirl had liver problems before Baracitinib but nevertheless, I believe we all should have regular blood tests.

[wishbone in reply to Shalf]

I appreciate that. It does say on the box that high levels of liver enzymes are a common side effect with baricitinib, which makes me wonder why we have to ask about having our bloods monitored, as you have, when surly it should be par for the course as it is with methotrexate. I'll certainly be asking my rheumy about it on tuesday.

[Hidden]

My OH has had 4mgs Baricitinib for a similar length of time and has made significant improvement.. His liver function OK so far. He also takes Metoject 20mgs and Salfazalazine so is taking quite a load. I gather this drug leaves the body quickly so your liver will be chuffed, but your joints clearly aren't. Grrr. I hope all calms down and you can restart B. asap.

[catgirl1 in reply to Hidden]

Thank you x

[wishbone]

I've been on 2mg of baricitinib for approx 4 months. I was taking hydroxy when I started taking it and the two meds worked fine together. Stopped taking hydroxy about 2 months back and though not as good as I was, I'm still in better shape than before I started taking baricitinib and was just on hydroxy. Hope your liver calms down soon.

[catgirl1 in reply to wishbone]

Thank you x

[gradyjackjacob]

Ive been on 4mg of baricitnib for the last two months and thankfully feel great ,perhaps the lower dose would work better for you.How often do you have a blood test?

[catgirl1 in reply to gradyjackjacob]

Usually every couple of months but more frequent now due to this problem

[sylvi]

No i haven't,but then i had never heard of this drug until Tuesday when i rheumy said he was going to put me on it.xxxx

[catgirl1]

Good luck with it - it really worked well. Hopefully I can go back on it in the future xx

[keeta]

Hi lovely i.ve been on 4mg uf baricitnib since the start of this year and its been the best thing i.ve taken .i.m also on sulfa 6 tabs a day . About 6 months ago my bloods started dropping and continue to do so .so they are going to slowly take me off sukfa to see if thats the problem but baricitnib continues ti be the best for me .i would be unhappy ti have to go off it .and my bloods are taken every 4 -6weeks at my request.good luck lovely xxkathyxx

[wishbone in reply to keeta]

Looks like it's that old chestnut again!..if you don't ask...................

Hope it's the sulfa that's dropping your bloods and not the baricitinib, and you get it sorted soon.

[keeta in reply to wishbone]

Ask in your doctors surgery for a few blood forms .and just make an app for your bloods every 4-6 weeks they don.t care then any probs are picked up sooner.

Yes i really wouldn.t want to go off them .they are the only thing that has helped apart from mtx but it didn.t like me.🤣😂😃 take care hugs xxkathyxx

[wishbone in reply to keeta]

Ok, will give it a go if I don't have any joy with my rehumy.

Hope I don't have any problems with baricitinib as most other meds are not really suitable.

You take care too, no hugs and xxxx I'm afraid...I'm too much of a he-man for that sort of stuff!

[keeta in reply to wishbone]

Bless you xx😀

[catgirl1 in reply to keeta]

Thank you xx

[Leics]

Hi, I was started on 2mg Baracitinib recently, had a few problems but probably going to start on it again soon. I was told to have bloods done once a month for first 3 months and then once every 3 months. Also told no blood tests no Baracitinib ! My issue was that I have to take antibiotics as well as Baracitinib because I need to prop up my non exsistant immune system, I think the antibiotics are the problem not the Baracitinib, was also warned lft’s could go up in the beginning and then settle back down to normal. I hope this is the case for you and you can at least reduce the dose to 2mg a day if it helps you.

[catgirl1 in reply to Leics]

Hope so 🙏🏼 and hope all goes ok with you x

[Hidden]

Hi and sorry to hear about your experience with this biologic. I was inches away from being prescribed the drug which would have been my first biologic. However I developed MRSA so it was postponed for the best part of a year now, while I tried everything to get rid of this stubborn infection which caused various painful complications. Now the huge flare up that saw MTX stop working for me completely is over, I was bitterly disappointed to learn that unless or until another flare-up occurs, they won’t prescribe it, citing strong likelihood of worse infections and side effects similar to your experience.

I’m aware this doesn’t help you one bit! But it does make me wonder if these new “life enhancing miracle drugs” are the answer for a lot of people. I’m just taking the dose of MTX now that would have accompanied baricitinib. Out of the 60 people at my hospital’s Rheumatology dept, two have also caught shingles which is apparently an added risk.

I’m actually not taking anything right now since I’m back on double dose erythromycin again 🙁. What are they proposing to treat you with now? Is it a temporary or permanent stopping of the drug? I was so angry my consultant wouldn’t prescribe baricitinib for me, but now I’m beginning to wonder if it’s the best decision.

[catgirl1 in reply to Hidden]

I’m hoping it’s temporary as it seemed to work well and it is my 5th biologic !! I’ve had a steroid injection so hoping that will tide me over. I appear to be in the minority having problems with these drugs though, so if you do get offered them in the future, I would give them a go 👍🏼 all the best x