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.

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 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.

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

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'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!

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

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. 😏

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

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

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.

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.

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 I’ve done my first Tyenne tocilizumab today . Has anyone else on here been changed over to this??

What's happening before I get to the point at which Tocilizumab is effective, bearing in mind that the steroids are being reduced? How will I know whether or not the Tocilizumab is working? Is Tocilizumab also classed as a "steroid sparing" drug in the same way as Methotrexate?

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).

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

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 🤷🏻‍♀️.

So after the latest Beni it's going to be Tocilizumab. Can't even pronounce it. I won't be starting until the new year which is my choice as I'm away out of the UK from next month. So with my old friend of 18 years Sulphasazine,a recent steroid jab ,sunshine it'll be okay.