Swapping Baricitinib for Tocilizumab

[Amnesiac3637]

Hi All.

Been having a bad time with flare and fatigue following Covid and although on Baricitinib 4 mgs and Pred 10 mgs daily I’ve not been good. I started a flare back in December and it seemed that in Feb after Covid the Baricitinib is much less effective, if it’s working at all. The rheumatologists are swapping me to Tocilizumab in a week’s time and I must stop Baricitinib, which, to be fair has been a great drug for me for two and a half years.

Has this happened to others? And will Toc give me horrible side effects (which I’ve never had from any of all of the other biologics over the past years). I know we’re all different but it would be great to know if this is the one! Just need a bit of reassurance really and would love to know my batteries may be re-charged cos they sure as heck are running on empty!

Thanks in advance as I know there’s lots of well informed RA warriors out there!

[Moomin8]

Hi 🙂Tocilizumab works OK for me. We are all different; I hope it suits you too.

[Amnesiac3637 in reply to Moomin8]

Thanks!

[Silverpixie]

Tocilizumab was my 5th biologic. None of the others worked. I take azathrioprine and leflumonide alongside. Only side effect is that I feel amazing! Hope it works for you

[Amnesiac3637 in reply to Silverpixie]

Thanks very much, so reassuring that Tocilizumab works so well for you and I can hope it’ll be the same for me!

[Amnesiac3637]

Thanks so much. I too have been on Prednisolone, usually 7.5 mgs daily for 33 years so very difficult to reduce but have had to increase to 10 mgs as body won’t play nicely! So glad Toc works for you and you’ve managed to taper off pred - my life’s ambition- so hope it does the same for me…….

[Knit12]

Hi everyone is different, unfortunately for me baricitinib stopped working after covid vaccine, and I was put on Tocilizumab. It didn’t work for me the dose was too strong and I ached all over, I reduced the dose and ended up with massive flare up and couldn’t walk. I’m now on Rinvoq which is a similar drug but relatively new and given to people who usually have experienced severe side effects. This is my 10 th drug in 3 years and my life saver. You will never know until you try, and hopefully like others it works for you, but don’t give up hope if it doesn’t x

[Amnesiac3637 in reply to Knit12]

Oh thanks and sorry tocilizumab wasn’t for you. It may not work for me either - I’m resigned to disappointment after all these years 🙄 - but still optimistic that this, out of the many I’ve tried, will be the one 🤞.

[Leics]

Yeah baricitanib stopped working for me too not as a result of covid but after a chest infection that I couldn’t shift and kept coming back. So in my case more of a stop start having to pause baricitanib so often. I carried on taking it for over 3 months after the infections cleared but it most certainly didn’t work again at all. Haven’t tried tociliz. so unable to comment on that but hope it’s amazing for you.

[Metal-legs]

I've been on tociluzumab for seven years, the only side effects I have had are low platelets and neutrophils which are monitored regularly. I really hope it's a successful drug for you, it's always the unknown when you start a treatment but I have everything crossed for you.

[Amnesiac3637 in reply to Metal-legs]

Thank you so much! That’s very reassuring.