Experiences with

Tocilizumab

can any one tell me if you gain a lot of weight on this drug and what the other side effects are . I’ve been asked to consider taking this in injection form for my RA as methotrexate didn’t agree with me and have been taking nothing since Xmas and really struggling my consultant has given me me an all

Thanks so much to everyone who responded to my recent query about commencing Tocilizumab. A lot of information to take in but all very helpful. This website is so useful. My good wishes to you all.

He has asked me to consider going on Tocilizumab. I have concerns about the side effects of being on 2 drugs at once. Prednisolone and Tocilizumab. Can anyone advise from their experience please? Thank you.

Thank you for all your replies to my post re taking tocilizumab alone. I have today has a ftf appointment with the Rheumatology Nurse who went through all my medication.

I have been doing very well for years on tocilizumab and realise that the switch may not be the reason for R.A. getting more active but it coincides.

Have there been any developments in last 6 months in petitioning NICE to extend use of Tocilizumab or generic? I tried a petition for extended use with MP and Rheumys help but it was rejected Im in my second year of Toc.

I’m in a lot of pain everywhere, could be because I’m overdue my injection or a reaction to the vaccine but anyway, I’m desperate for my next Tocilizumab and don’t think I can wait a week! Best wishes to everyone.

I was then given Tocilizumab(Roactemra) and until now it seems to be working😃.

I was started on Prednisolone 60mg in September and am now down to 4mg and also self injecting Tocilizumab since December 2024.

This has been suggested to me for RA. I've used other injections but overtime I got severe gut problems or aggregated what I already have Diviculosis and Pancreatitis and taken off them. Latest was Benipali that after a couple of years caused severe gut pain. So Tocil has been suggested but although

I am about to start this medication and wondered whether or how you take it with you to use when travelling overseas? I am in New Zealand and it is unfunded unfortunately for GCA but my rheumatologist thinks I should start on it after another debilitating round of this enemy disease. Tips on how you

Hi there I was on Tocilizumab, weekly injections. The drug worked very quickly for me which was great, but it suppressed my immune system too much.

I'm still having tocilizumab injections every two weeks. I'm still experiencing quite a lot of fatigue / low energy. This doesn't exactly surprise me as I wasn't expecting miracles!

Now I ask myself was it the Tocilizumab side effect or just a coincidence.

Hi there, I’m starting tocilizumab tomorrow. I wondered if there was anyone on this forum who is on this biologic and if so what their experience has been so far. Thanks. x

Last July I was on Tocilizumab and responded well until I started to suffer vertigo symptoms and nausea, rheumatologist stopped meds to see if symptoms cleared, I have had MRI scan and waiting results. Now I’m not taking any medication, (4weeks now).

After much discussion the dentist recommended extraction and left me to talk to Rheumatology concerning how long to stop Tocilizumab weekly injections pre extraction.

My (and my consultant’s) goal is to get to 5mg by end of June at which point I’m due to try Tocilizumab as my steroid sparer. I’m currently tapering from 22.5 to 20mg and am experiencing very high heart rates and palpitations randomly. I spike to 134bpm just sitting sometimes.

The drug Sarilimab, another drug mentioned was Tocilizumab which ink test proved effective with newer patients. I will check with my doctor,

I cannot take steroids so my hope is to (a) secure a diagnosis then (b) push for tocilizumab. I have a PET scan booked for next week to diagnose me but I've discovered the radioactive tracer has a fluorine element that can severely injure me (I suffer for fluoroquinolone toxicity disability).