Experiences with

Tocilizumab

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

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?

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

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 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 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. 😏

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.

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

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 ).

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.

Could any of these be the culprit for high blood pressure rather than Tocilizumab injections?

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.

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've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs

I had to stop all of my meds (Tocilizumab, Metoject and Sulfasalazine - along with other bits and pieces) about 4 weeks pre op, and I've only been back on them for one week - 2 weeks post radiotherapy. Just over 4 months off Tocilizumab and just under 4 months for methotrexate.

After the seminal GiACTA trial, tocilizumab is now recommended as a first-line therapy for giant cell arteritis in combination with a glucocorticoid taper.’ (Worth reading the embedded links.) There’s a difference between Tocilizumab being recommended and actually being prescribed.

I am switching from Tocilizumab to Anatacept. Has anyone got much experience with abatacept please?

The results clearly illustrate the unmet need for better treatment options for English patients who stop tocilizumab and then have a GCA relapse. Importantly, it brings to life the results found in TOC STOP where up to half of people with GCA had a relapse after they stopped tocilizumab.

I’m finally back on Tocilizumab after an ankle replacement, 2 bouts of C-diff, a chest infection and minor surgery for an ingrowing toenail. It’s been a bad 3 months and my RA has been flaring the whole time with little I could take other than paracetamol.