Hello all -
I recently had my tenth infusion of tocilizumab and during the time I had the infusion there was nothing out of the ordinary to report however on my way home (a thirty minute drive) my skin started burning and itching so badly by the time I got home I swear I felt like peeling my skin off my flesh. (I was very close to home when this happened otherwise I would have gone straight to the ER) I didn't have any breathing or swelling issues and I had an epi-pen in my trauma kit which I was close to using but I called my rheumatologist who told me to take a large dose of prednisone and Benadryl. Fortunately I responded to that very quickly and was back to normal with 30-40 minutes. I have an appointment on Wednesday with my rheumatologist to discuss this but regardless of anything he might wish to try to prevent this, I think I'm done all together with tocilizumab. I've had anaphylactic reactions before to other completely non related drugs and I do not care to repeat the experience. Unfortunately I'm taking tocilizumab for my GCA and PMR in addition to my RA and it's done a great job of knocking my inflammation down. My labs are practically normal. The best they've been in 15 years which means absolutely nothing if this drug kills me ☹️
Has anyone else had a similar or other bad reaction to tocilizumab? Were you able to continue or did you stop?
Thanks so much for your time and consideration.