Experiences with

Tocilizumab

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.

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

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. 😏

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

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?

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.

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

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.

Unfortunately, my levels have fallen to 1 now so yesterday I was told not to inject anymore Tocilizumab and increase the Prednisolone until treatment can be changed again in 4-6 weeks. I’m due to go abroad next week and I’m worried about the infection risk on the flight and whilst eating out.

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.

I am advised that a biosimilar to tocilizumab has been approved in the UK and will be available at a more economical price , enabling NICE to allow NHS prescriptions for GCA after the initial 12 months.

I am now on Tocilizumab 4 weekly infusion which seems to control it beautifully. Gone are the nodules and elbow bursa. Anyway my question is are many of you people also late starters? Of which I might add I am glad about as I had a very active life style. Love to all xx

I am currently taking sulfasalazine daily, methotrexate tablets weekly, tocilizumab injection weekly and tapering prednisolone. I also take folic acid and ferrous sulfate. And HRT. I feel that I rattle when I move!

I’m on MTX subcutaneous 25mgs and have today started Tocilizumab subcutaneous. I take calcium citrate, magnesium citrate, biotin with zinc & selenium plus Omega 3 (approved by Consultant ).

I wonder if it’s linked to the Tocilizumab. Thank you for being somewhere to turn to x

They have cut the dose to half of the tocilizumab as long as his ALT is blow 120. However his RA is getting worse and not controlled.