Tocilizumab

Hi I've been put on tocilizumab, can anyone enlighten me re. Side effects ??

[Neonkittie17]

We’ve got a few people on here who will be able to help you and I’m looking to move to this next time I’m due treatment. Good luck.

[AgedCrone]

Don’t look for side effects......just see how YOU get on with it

If you have a problem let us know ....but look forward to it working really well for you!

What you read on here is what happens to other people ..... the trick is to think that you will be the one person that it really works well for!

[ketiv74 in reply to AgedCrone]

Wise words!

[allanah]

Look on nras.org.uk loads of advice on drugs on there. My personal experience is its been wonderful fir me with no side effects.

[ruth_p]

I’ve found this to be a great drug. The best side effect has been living a “normal life”. I’ve been in remission since starting it in 2015, it’s worked the best of all the biologics that I tried. 🤩 I’ve had some weight gain so you may need to watch what you eat, but I’m slowly losing it with diet and exercise, and I’ve had allergies since starting biologics in 2008 so this is not specific to tocilizumab. Good luck.

[Silverpixie]

My fifth biologic. Others didn't work. AMAZING. Took 4 months to kick in initially though. I probably get more infections but no discernible side effects other than a more joyful pain free life! Hope it works for you

[bubblyalex]

Versus arthritis website is good for side effects of each medicine we are prescribed. Your rheumy team should have given you a leaflet. They also have you another leaflet when you go for your first infusion. I have just started it and waiting to see. Some of the possible side effects are a concern for me and my situation but I can’t have jak inhibitors or rituximab due to dvt for the first set of meds and Covid risk for the second. Do search here and Versus Arthritis and ask your rheumy team.

[994464]

Started this biologic 4 weeks ago after a full year of very bad flare ups and no joy with other medications ......I was terrified about starting this one as from what I read it's one of the newer ones on the market and the side effects are endless (as with them all I suppose) ........but 4 weeks in I can notice a huge improvement already and I have slowly forgot about all the side effects (which I have had none of so far thank God ) because I am just so happy that I'm starting to be more mobile I hope your experience is the same

[Brushwork]

Hi Djohnston,

There is a lot of information on here and elsewhere about the potential side effects.

I have been on Tocilizumab for only 10 weeks. I use the pen rather than the syringe or infusion. Within the first 12 hours I only get a mild headache, a little dizziness and mild nausea but honestly it is pretty negligible, I can carry on with life.

The benefits? I have not felt this well for a long time and for me, it seemed to kick in pretty quickly, though it was supported by a steroid injection for a few weeks.

All this said, we all react differently to medication and while it might be great for one, it might not work at all for another etc etc

I wish you well and hope this is your magic formula too

go gently

[Swimming20]

I call it my miracle drug ...I praise it highly..only thing l have to watch my cholesterol levels which is nothing than the pain l was in before l started on it ..good luck

[eastbournelady]

I was on one of trials for it and I dont know if I had it or placebo but i ended up with swollen legs high bp and extensive skin reactions and got taken off trial!!! but I know that everyone is different so try it.

[Hiland]

I have had 5 injections so far and generally feel better.No side effects except a few sharp stabbing pains in my head on the day of injection. I hope you get on OK