Can anyone share their experiences of Tocilizumab? I've been on everything and reacted. This is latest suggestion. I have ANA antibodies.

[peejay74]

[Crazyjo]

Hi I was on tocilizumab but unfortunately didn't work for me. Just landed up getting lots of colds and sore throats. Hope it works for you

[alibromo]

Hi Peejay. I have been on tocs (for short) nearly 2 years now. My esr level has reduced & at a steady level. I have no side effects apart from feeling very tired for about 24hrs after. The biggest advice i can give you is to drink plenty of water before, during & after your treatment as some people say they get terrible headaches which i did get at first until someone on here adviced me to drink drink drink. Good luck with your treatment & hope it works for you xx Alison

[Kim-NRAS NRAS]

Hi Peejay74

NRAS has a peer to peer telephone support service where we can match a call for you with a volunteer who has been on this drug before to talk you through it. If you think this might be helpful for you, please give our helpline a ring on 0800 298 7650, they are open Monday-Friday 9:30am-4:30pm you can also email [e-mail] if those times are not suitable for you.

Kind regards

Kim

[farm123]

Hi, I had 3 infusions of Toc over a 4 month period as it affected my white blood count after the first 2 so missed a month while it recovered before having the 3rd but WBC went too low again and advised to stop. I don't remember having any effects from the infusion itself. I think it was between 3 - 4 hours at the hospital. Hope it works for you.