Taken off Baricitinib and feeling much worse!

[ubound]

I was taken off Olumiant/Baricitinib (at least for a while) due to high creatinine numbers. I was taking it with Arava and an occasional NSAID. Honestly, I also ate way too much chicken around the time of the blood test. I wonder if anyone here experienced high creatinine numbers due to Baricitinib.

Also those of you who have been taken off it for a while due to infection or something else, did you also feel that you are now worse than before you started baricitinib? Does this go away?

For me it helped me some, but not too much, but now taken off it, I am not functioning. Regular doses of corticosteroids do not fix it anymore and I am taking new record doses. My face looked so much better already and now it is swelling up again due to steroids.

I am sorry if I sound negative, I am not usually a negative person. I am thankful for this community because in other places online most people are not familiar with baricitinib.

[Claire32]

Hi, I’m so sorry to hear your having some problems with Baricitnib. i m on this drug ..I don’t have this side effect but just wanted to say hi. I know how upsetting it can be when you have side effects or a drug stops working.

Has your rheumy team said what the plan is? Will you go back on it once your levels go back to normal? Or move onto something new?

I agree this forum is lovely and it’s picked me up a few times when I’ve failed on a drug and been feeling really sorry for myself and in lots of pain.

Tell your rheumy team your struggling ...push for a plan of action.

Take care xxxxx

[ubound in reply to Claire32]

thank you for your kind words and support. It didn't stop working, it did help but not as much as I wanted, and then I became much worse when I was taken off. We are not sure what the plan is. I will need to take another creatinine test after 2 weeks off it and based on that, my rheumatologist will suggest something. But I am afraid that we will have to either lower the dose or try something completely different.

[Niao]

Sorry, I am not familiar with it either, but just wanted to say I'm so sorry you're struggling. I really hope you're able to get some answers and are able to get back on this if that is something you want to do, or on to something more suitable, as soon as possible. Xxx

[ubound in reply to Niao]

Thank you so much! 🤩🤩🤩

[Summerrain14]

I am so sorry you have had to stop your baricitinib and are feeling much worse.

It is such a difficult place to be in deciding on the appropriate treatment plan depending on the outcome of other factors too.

I find myself in this position at the moment too. Heading into week three without my RA meds waiting for a review with the gastroenterologist before a decision can be made about my treatments again. Steroids being increased again and struggling so am digging very deep for some more patience to get me through this uncertain time.

I have not been on baricitnib but just wanted to let you know you are in my thoughts and hoping a way forward can be found for you soon x

[ubound in reply to Summerrain14]

We need patience. A lot of it! Thank you so much for your kind words! I hope things will get better for both of us. 🤩

[Minah]

Sorry to hear about your suition and could imagine in how much hard time you would be having because I am also have been asked by my Rhumotied nurse to stop my RA medicines and wait for more diagnosis of my stomache. And I even cannot take any pain killer at all so I have no option to suffer especially if I cannot consult privately to be treated at time .Plz keep on reminding this will pass too and keep in touch with your gp and rhumotied advice line too

[ubound in reply to Minah]

Thank you very much, and I hope you find a solution soon. If not for steroids, I wouldn't be able to stand up even. Hope you get well soon!