Experiences with

Tocilizumab

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 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

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'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!

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

He also prescribed Tocilizumab to help the prednisone get my major flare up under control. Has anyone had any success or feedback regarding this drug? Thank you all again.

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

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

Hi there, I’m new to Tocilizumab, however 5 injections in and feeling so much better already which I’m grateful for. For the last week I’ve had earache and it really is sore but reacts well to painkillers.

I have Tocilizumab and Metoject injections weekly. Has anyone had antibiotics that shifts sinusitis? I know we're limited to which antibiotics we can take, but this is really not fun. I know we can't fight infections very well with these pesky meds. 😏

These side effects are generally manageable with steroids or tocilizumab, or by holding doses and administering steroids or tocilizumab. First-dose administration requires 24-hour hospital monitoring.

Hi there I’ve had GCA for two years and been prescribed Tocilizumab for the last year I’m just coming up to the last 3 injections my consultant has told me that I can’t continue with this drug because of the cost which seems very unfair.

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).

Has anyone had similar problems with tocilizumab and were they able to find another medication that worked? Many thanks. El

Last week, I had my yearly rheumatology appointment, where we apply for funding for my Tocilizumab. My rheumatologist asked me how I feel out of 10 - I was able to say 9! My bloods were actually normal, for a change - my ALT is usually high due to MTX and Tocilizumab, but not this time 🤷🏻‍♀️.

checkpoint inhibitor; experimental in PC) Nivolumab + Ipilimumab (PD-1 + CTLA-4 combo; experimental) Thalidomide (Immunomodulator targeting TNFα, IL-6; off-label/experimental) Lenalidomide (Immunomodulatory analog of thalidomide; experimental) Siltuximab (Anti–IL-6 monoclonal antibody; experimental) Tocilizumab

Had my first injection of Tocilizumab/Actemra on 23/12/20 and injected once a fortnight VG, then zero Prednisolone since 21/8/23.stopped Actemra March 2024, all good until flare confirmed 9/7/24. CRP11 & ESR36. Back on 20mgm Prednisone.