Update to ? Tocilizumab

[Hiland]

I recently wrote for advice prior to starting on Tocilizumab as I was little nervous about side effects. I have now had 3 injections and my CRP is back to normal so have started to taper my prednisone down again. However I have been having sharp pains in my head, Rt temporal area, but also above and behind my ear and wonder if anyone else has experienced this. It is worse on the day of injection. I am assuming it is a side effect but not sure. Thank you for reading.

[PMRpro Ambassador]

The fact the CRP is down to normal does NOT mean there is no inflammation - it is because of the way TCZ works. Other ways of monitoring inflammation (symptoms) must be used. I hope your rheumy is aware of that, many seem not to be.

[SheffieldJane]

Do over the counter painkillers help? Pain killers do work for me when I get sharp head pains with Tocilizumab usually on and around injection day. I am mindful of GCA possibly being on the march, so do report it.

[Hiland in reply to SheffieldJane]

Thanks for responding. I have GCA, I was put on TCZ following a relapse. I had never had such sharp head pains before therefore wondered about side effects. I now see from replies that is the case. OTC meds do help.

[Sophiestree]

Did you have those kinds of pains in your head pre TCZ? Or are they new to your list that you can gauge what it might be?I would mention it regardless.

[Hiland in reply to Sophiestree]

Thanks for your reply. No- these particular pains followed TCZ, therefor why I was concerned. They have improved during the week. If they are as bad next week I will mention it.

[SheffieldJane]

Mine are short lived incidentally, like a single sharp stab, not continuous.

[Frenchduck]

Hi Hiland, it's funny you should say that as I sometimes have those pains after my injection, especially behind the ear. They go away as the week goes on. I always feel better generally as the week goes on and as bright as a button on the day that the injection is due! Then the following day I have some side effects again but I would describe them as mild. I have had 30 weekly injections so far. I'm not on prednisone anymore. I'm looking forward to being able to space out the injections in two weeks time in the hope that I'll feel better for longer.

[Hiland in reply to Frenchduck]

Thanks--that is encouraging!

[SheffieldJane in reply to Frenchduck]

That sounds familiar!

[Jim-CJ]

Hi Hiland,My wife has been on Actemra for 3 years and she also gets similar pains, but it goes away in a day or she never has them.

Jim & CJ

[Hiland in reply to Jim-CJ]

Thanks--hope this is the case with me too.