I recently posted that I had been on weekly injections of tocilizumab but had got no relief after many weeks. After 12 weeks when I was still in a lot of pain and had noticed absolutely no improvement, my rheumatologist changed me to monthly infusions. Two weeks after my first infusion my life has changed dramatically- feeling human again after a long long flare. Just posting this in case anyone else feeling despondent after the weekly injections have not worked for them. No idea why my particular response to this treatment has worked in this way and of course no two sufferers are the same - but for me life is now looking rosy again.
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Sassifrass
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I stopped Humira last year because the effectiveness had worn off after being on it several years. Switched to weekly Tocilizumab injections in November and started to feel better but my neutrophil count dropped too low. After a bit of trial and error I ended up on one injection every 3 weeks. It seemed ok to start with but now feels like things are flaring and arthritis activity is not controlled enough. After seeing my consultant a couple of weeks ago she suggested switching to the monthly infusion. I will have my first one next week.
I’ve got a couple of questions if that’s ok?How long does the infusion take? Did you feel ok after the first one? I’m planning to drive to the appointment so just checking if I’ll be ok after it.
My (Acterma) Tocilizumab infusion took one hr. I was scared to death thinking about getting it but had no other choice. Three other self injection biologicals did not work!
Anyway, I worked myself all up for nothing. Nothing at all happened while I was getting it or really afterwards. Maybe a little more tired two days later, but I am ALWAYS tired!
They set me up in a room that looked like a small living room. I sat in a recliner and the doctor popped in a movie! The nurse came in 4 times during the hour to check blood pressure, temp & pulse. Also asked how I was feeling.
I brought a book to read, but ended up watching the movie. Only got an hours worth, so I will finish it next time.
The whole process from checking in, being seen by doctor first in exam room, then moved to the faux living room (lol) and had the IV put in by the doctor to the actual infusion of one hr, then taking the IV out was a total of 2 hours.
Nothing happened yet. Still need 15mg prednisone to combat long long flare. Cannot reduce. Was down to 8.75mg after weeks and weeks of being on 25mg and wrists starting screaming so had to up it to 15mg to be able to get to work!
The whole point of moving to the infusion is to get OFF this prednisone!!!
Thank you for your responses. Yes, the infusions ate absolutely no problem. I was previously on rituximab, the infusions taking 6+ hours so one hour seems nothing. I drove home afterwards with no issues. I have my second one tomorrow so really hoping this is the one for me. Good luck everyone.
Thank you Sassifrass and Troygirl for the info, really helpful. It does seem like a big effort of trial and error to get the right drugs for each person. Really hoping this is the best way forward for you both and for myself! x
I have been on tocilizumab for 2.5 years now I think. Every infusion takes around an hour.
I honestly cannot remember when I started on it. All I know is that this is the third biologic I have been on. Started with all DMARDS, then onto humira (major side effects and no relief), Anakinra (kineret) 49 days of daily injections and no relief. Then started the tocilizumab. Within 4 weeks it took my crp from 159 down to 1.8. Now my crp fluctuates between less than 0.2 and 2.0. Makes me feel mostly human.
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