Actemra side effects

[Darcy2000]

Will check with my Rheumy in 3 weeks but just wondering if anyone had side effects from Actemra and wondering if the Med has an an accumulative affect . First 3 weeks had no signs but tonight real light headedness

[SheffieldJane]

Extreme fatigue, and end of the day, flu type feelings have increased. Not sure how much the rapid taper off Prednisalone is responsible. I have also noticed an increased breathlessness. I do my sixth injection tomorrow.

[Suzita76]

I must say that after almost a year on self-injected Ro-Actemra, I have had no side effects (apart from slight redness at the injection site, which goes after 24 hours). I have now been able to stop all other medications and feel wonderful!

[Blackcatlover]

I have been taking Actemra by IV monthly. I’m very tired the day of the IV and experience some eye pain and dizziness occasionally. One more IV and I will be switching to the injections. It’s the only medicine that has helped me taper my Prednisone. I’m currently on 4mg. I could never get below 15mg without the Actemra. I would say the side effects are minimal. Just be sure to always do your bloodwork.

[Darcy2000 in reply to Blackcatlover]

Thanks hoping it is a one day a week that I feel dizzy and not accumulative... one month down 11 to go

[Darcy2000 in reply to Blackcatlover]

This is a question .. The blood work was used to check CRP and SED RATE but both are inhibited by Actemra Mine went from 35/ 40to 2.5 after first injection

So what is the point of the blood work?

[Blackcatlover in reply to Darcy2000]

The bloodwork is to check liver, kidneys and cholesterol. If you look on an Actemra site, it says you should do this every three to six months. My last test two weeks ago showed everything fine but platelets were raised. My cholesterol has slowly gone up but my HDL is very high so no worries yet.

[Darcy2000 in reply to Blackcatlover]

Okay thanks

[Rugger in reply to Darcy2000]

They also look at our full blood count (FBC) for red and white cells etc. My white cells have dropped, so I have been told to 'pause' the Actemra for 2 weeks and have the FBC repeated next week, before knowing if I can resume the injections. I do hope so!

[PMRpro Ambassador in reply to Rugger]

Did they say if that happens a lot?

[Rugger in reply to PMRpro]

In the listed side-effects it's classed as "Common.... may affect up to 1 in 10 patients."

[Blackcatlover]

So glad to hear this. You are a very strong person. So glad Actemra has helped make your journey better.🌼

[Chrisellie]

Yes I felt very tired on the day of the injection but put this down to the fight going on in my body. It diminished in time and of no real issue for me. It worked to get me off pred and off injections in 12 months. Now med free🤫. Tocilizumab stays in the body for up to 3 months, diminishing . I am not aware of it accumulating though.

[Jim-CJ]

Hi Darcy,

My wife has been on Actemra for 2 1/2 years. Only recently she has seen a decease in white blood counts. Her rheaumy has now changed her routine from once a week to once every 10 days. Will see in a month if it helps. But at 4 mgs prednisone, no flares of GCA for the entire time on Actemra.

Hope This Helps,

Jim & CJ

[Darcy2000]

Thanks for reply ..will hang in with light headed ness til I talk to Rheumy on the 9 th

[Rugger]

Yes, I am aware that I have neutropenia and await next week's blood results!