Hi there,
I have recently started weekly tocizilumab injections, but 6weeks in am not feeling any relief. I did have to miss one week due to digestive problems, so have had 5 doses so far. Can anyone who has similar treatment advise how long it took to feel any improvement? Am still in total flare and considering asking doctor for some oral steroids to see me through.
Hi, I was on monthly tocilizumab infusions for four years and I found it was the best treatment that actually worked for me for four years. Never had weekly injections so not sure about that. Mabey a call to your Rhumatology nurse might help, good luck! 🤗x
Thanks. That’s nice to hear.
I have been on tocilizumab for just over 2 years now, monthly infusions. This drug for me started working in less than 2 weeks. I started it with a crp of 157 and when I did my bloodwork 2 weeks later my crp was down to around 50, 2 weeks later I flared to 95, 2 weeks later down to 3.1, 2 weeks later 1.2. Now after 2+ years my crp fluctuates between less than 0.2 and 3.1. I am quite happy with this medication and how well it has worked.
I started with all the dmards, nothing worked, just made me very sick. Then the humira, I got hundreds of tiny, very painful and hard doughnut shaped blisters all over my hands and fingers. Stopped humira and they went away. Then came the Anakinra, 49 daily injections and no relief. Started tocilizumab and all is quite good now. Still no actual diagnosis but most of my symptoms are being managed. Only real issue I have with the tocilizumab is that I retain a lot of water for a few days after the infusion. I gain anywhere from 5-10 pounds after the infusion and have to take a diuretic to get rid of the extra fluids.
Hope this helps you.
Hi Sassifrass, I am on the 13th week of Tocilizumab injections. For me the improvement has been gradual & started after about 3 weeks. It levelled out at about 10 weeks and now I am feeling much better than I was before; still have to take it gently but the pain and inflammation greatly improved. If you have only taken 5 then there is still 7 weeks for it to work for you. I hope it does.
I have been on Tocilizumab for 12 weeks. I was on steroids as well when I first started. I have been off the steroids for 5 weeks. So far, the improvement has been good, but agree with Rosey that the improvement is gradual. I have been on a variety of biologics in the past. So far, I have found this one works well and no bad side effects. Good luck, stick with it for a bit longer and hopefully things will improve.
Thank you to everyone taking time to answer. I have had RA for over 30 years but it has been well controlled from much of the time. Different treatments from gold injections to the biologicals etc. Did really well on embrel for many years and had almost forgotten how bad the pain can be - particularly getting out of bed! Am now on small dose of steroids for a month, by which time I hope the tocilizumab will have kicked in. Fingers crossed. (If only I could!) Thanks again.
Hi 👋 gradual improvement over a period of 3 to 6 months of monthly infusions- been on it for 6 years now. Hang in there, you may be at the tail end of a flare and that’s the reason for the delayed response to the positive effects this particular biological can have. Best thing I’ve tried tbh. Maybe worth asking for Arcoxia 90mg as a daily patch up until sorted - better than steroids imo as less stress on your long term health- as far as I am aware the Arcoxia is ace unless you have heart problems. Worth an ask of your go, or RA consultant/nurse. Good luck 😉 I’m having a loooong flare atm and the effect of the Toci is less as a consequence but be kind to yourself, take time out to relax and eat well xx and wait!! Easier said than done but you know what I mean - like you I’ve had it for donkeys years and still get very down when nothing seems to relieve the searing pain. Take care xx
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