I have recently stopped responding to Xeljanz & am supposed to start Actemra this week. If you have taken this one (I'll have the injectable version), can you say what sort of side effects you've had? I'm interested in knowing about the more common ones. Is there fatigue? Flu-like symptoms? If so for how long?
Thank you!
Hi, yes I took actemra (toxilimab ) for 2 years, it worked well for me as an infusion, but after changing to self inject it didnt seem so effective. I had lots of cold sores and some fatigue. I eventually changed to abatacept and thsnk goodness its great. I met lots of folk on roacemra for years who were great so I hope youre one if them.
Hi I started in adalimabab Humira eight years ago and it worked great until I had a baby and then stopped being effective.. then they gave me benepali which was useless and now I am waiting to start tocilizab next week so praying it works. Currently taking steroid tablets and need a long term fix...good luck!
karen
I started on benepali that did nothing then I went on acterma injections once a week. After the second use I received a mouth full of ulcers that eventually spread to my throat. It was horrible couldn't breathe or eat pains still there. had 2 go on 3 courses of antibiotics as I then ended up with a respiratory infection.
I have since ceased until it clears. Taking nothing at moment been 4 weeks and pains and stiffness all back.
Don't know what other drugs to go on as unfortunately I have has severe side effects with everything. Methotrexate effected my liver badly, prendisolene did receive symptoms but caused its own side effects especially fluid retention.
good luck didn't want to sound so negative but it certainly was not good for me. It may work wonders for you and hope it does.