tocilizimab worsening symptoms AOSD

[Slinkyminx]

I have Adult inset Stills disease and have been through a huge amount of DMARDs and JAKS. Following a review I have returned to tocilizimab but during this tube just swellings gage increased. Joint pain has worsened and I feel more weak. Has anyone else experienced this worsening of symptoms when starting toc. Tidbit eventually work it did you stop taking it. I had gallbladder surgery before taking toc and I was recovering well. Now I have more pain around the surgery areas than before. Thanks in advance

[Vonnie10]

I don't know or have any answer for you alls I know it can take a while to kick in sorry your suffering .

[Slinkyminx in reply to Vonnie10]

thank you

[KittyJ]

of course until it starts to work properly then you can experience a worsening of symptoms, let’s hope it starts to work soon 🤞🏻

[Slinkyminx in reply to KittyJ]

thanks got your reply. I was going to stop taking it ! Maybe I’ll try another couple of weeks. How long did it take to work for you?

[KittyJ in reply to Slinkyminx]

I’m not on it but any drug can take a while to work so there is always the possibility things will get worse while you wait. I’ve never had any drug act quickly sadly.

[strongmouse]

My husband is on tocilizumab and it took a while to work. If his RA has flared then he often feels worse the first few days after the infusion (which he has every four weeks). Definitely better on it overall. He has had a steroid injection to calm a flair and that made a big difference, but the steroids interfere with his diabetes. It can be hard to work out how to manage best.

[WilfDog]

Hi I'm not on Tocilizimab but I'm on another biologic, enbrel, for Stills disease. I had my gallbladder removed and it took a long while before the pain calmed down around the surgical site. I hope your biologic has now kicked in and you are gaining some benefit from it.

[Slinkyminx in reply to WilfDog]

Hi. I had my gall bladder removed last year! Still hurts a bit if I eat too much fat. I’ve tried many drugs co trimoxadol made a Machropharge activation syndrome which can happen with stills. I nearly died 😞. I get a lot of infections with Tocilizimab waiting for canikinumab which is supposed to be a game changer with stills. Which joint have you had replaced.