Does anyone have symptoms from Actemra (tocilizumab) infusions?
Hi! After 2 years of flare ups and ER visits I was diagnosed with AOSD in July 2025 at 21 years old. I was given prednisone and slowly weened off of it as I started monthly ilaris injections. The ilaris injections would work at first but by the end of the month and about a week before my next injection the full force of AOSD would come back. This happened every month I was on ilaris even after increasing the dose multiple times. I was also told to try small amounts of prednisone when the stills symptoms start appearing again before my next injection but it wasn’t very helpful.
By January, even with the injection, for the full month I had stills symptoms. Fevers, muscle aches, extreme fatigue, complete loss of appetite, etc. So by March, my Rheumatologist switched me to Actemra infusions bi-weekly. The infusions have been working perfectly for the Stills symptoms no fevers or anything and for the most part I’ve been living life normally again.
But I’ve noticed many new symptoms after starting Actemra and was wondering if anyone can relate because my rheumatologist makes it seem like it’s unrelated but the timing is just too much of a coincidence for me to believe that.
The week after my first infusion I got a rash on my face (different from stills rash) almost looks like rosacea and it covers my cheeks, nose, and does a circle around my mouth. It is now the end of June and this rash has not gone away. I’ve tried hydrocortisone, Acne creams (Benzoyl peroxide), antibiotic creams, moisturizer twice a day, nothing works. It’s kind of embarrassing, I have people ask me weekly what’s wrong with my face.
Another symptom that began week after I started actemra was stomach issues. Almost anything I eat does not sit well (constipation/ diarrhea/ vomiting) I notice this most when I eat fruits, salads, and red meats so I try to avoid these things but honestly I have these issues everyday still. I am actually writing this because I just vomited my dinner, and I know symptoms aren’t as bad as the stills one but I just wish I could feel normal and fine. (Went to GI for this they ran tests and said everything looked fine)
Lastly, I get like itch attacks I will be completely fine and then suddenly I get two hours of like full body non-stop itching. The itching causes me to rash up especially my hands and legs. Nothing works to stop this no itching creams or Benadryll or hydrocortisone, literally nothing I kind of just cry, strip naked and itch while waiting for it to end. I also get like weird dark marks for a few weeks at a time I had some on one of my knuckles, then my elbow, now under my armpit, and on the side of my ribs, I can’t find anything about what this is online it almost looks like scars, but I’ve never been cut in these places and it goes away within weeks.
I haven’t seen anyone talk about actemra symptoms so please let me know if anyone can relate to this. None of these symptoms appeared until immediately after starting actemra infusions.
Thank you :)