Tocilizumab reaction after 9 months: Hello all - I... - NRAS

NRAS

37,276 members46,139 posts

Tocilizumab reaction after 9 months

Nitrobunny profile image
5 Replies

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.

Written by
Nitrobunny profile image
Nitrobunny
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Matilda7 profile image
Matilda7

Sorry to hear what a hard time you're having. I'm on Humira and have injection site reactions but nothing systemic. Hope you find something which works well for you.

Nitrobunny profile image
Nitrobunny in reply toMatilda7

Thank you, I'm sure we will figure something out. It's a never ending trial and error cycle. That's for certain. 😊

Tarawoman-23 profile image
Tarawoman-23

Yes I have the same reaction each time plus I get uti if I don't take a prophylactic antibiotics, I take antihistamine two days before infusion and for 4 days after plus 10 mga of prednisone 3 days before and 5 days after and it has sorted things out

Nitrobunny profile image
Nitrobunny in reply toTarawoman-23

Thanks for your reply! I was thinking there had to be someone out there who was successful in managing the reaction. I am currently taking 10mg of prednisone daily and was at the time of the infusion so I will be curious to see what my rheumatologist has to say next week. I know he was super nervous when it happened.

Whatsnext profile image
Whatsnext

Thank you for sharing. I am on this medicine and it is good to know what could happen. I have not had any big reactions. I do feel crappy on third day after infusion; I feel fine after that day.

Not what you're looking for?

You may also like...

Tocilizumab infusions

Hi all, I was wondering how people feel after a Tocilizumab infusion and how long they take? I'm...

Tocilizumab

Hi all, I was diagnosed with RA approximately nine years ago and started off on Methotrexate,...

Tocilizumab

I am due to start Tocilizumab Infusions in two weeks. Does anyone know the difference between...
tazman3 profile image

Tocilizumab injections

Happy new year to everyone. Does anyone out there have tocilizumab injections? I have had tocs...
alibromo profile image

Tocilizumab

Hi. I am starting tocilizumab via infusion next week. I've had lots of biologics without success...
kerpag profile image

Moderation team

See all
KateL-NRAS profile image
KateL-NRASAdministrator
Donagh-NRAS profile image
Donagh-NRASAdministrator
Nicola-NRAS profile image
Nicola-NRASAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.