Update to ? Tocilizumab: I recently wrote for... - PMRGCAuk

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Update to ? Tocilizumab

Hiland profile image
11 Replies

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.

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Hiland profile image
Hiland
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11 Replies
PMRpro profile image
PMRproAmbassador

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 profile image
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 profile image
Hiland in reply toSheffieldJane

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 profile image
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 profile image
Hiland in reply toSophiestree

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 profile image
SheffieldJane

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

Frenchduck profile image
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 profile image
Hiland in reply toFrenchduck

Thanks--that is encouraging!

SheffieldJane profile image
SheffieldJane in reply toFrenchduck

That sounds familiar!

Jim-CJ profile image
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 profile image
Hiland in reply toJim-CJ

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

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