Starting Tocilizumab Infusions

[hanlm]

Hi everyone,

I was just wondering if any of you can share some of your experiences with Tocilizumab?

I had my first infusion a week ago and feel the same at the mo. I'm desperate for it to work as I have already failed with Enbrel and Humira and am only managing to get by with steroids, tramadol and regular joint aspirations. The good thing is I haven't felt any negative side effects this week after the first infusion

For those of you it works for, how long did it take before you started feeling any improvement in your joints? My clinical nurse said it could be months but that lots of people have found it helps with fatigue quite quickly? I'm trying to be optimistic and hoping the swelling goes down soon!

Hannah x

[girlmode]

hi hanlm

I was started on tocilizumab infusions in dec last year moved on to weekly injections 2 months ago. I have only had one bad flare since lasted 4 days. I didn't feel the benefit straight away it took about 6 months then gradually getting better each month. my esr was very high and cpr so you might feel benefits sooner, I can honestly say this med is the first one to give me back some normality I hope it works for you to. good luck.

[hanlm in reply to girlmode]

Hi girlmode,

Thank you for your reply, I'm glad it is working for you and given you back a sense of normality. xx

[davannh]

I started Tocilizumab infusions in January 2010 after years of trying the standard treatments. ( Gold injections, Cyclosporine, Humira, Enbrel, Rituximab, to just name a few) Tocilizumab worked within 3 months and has continued to work. My ESR and CRP reduced from two and three figures down to single figures. My haemogoblins which had been so low that I needed blood transfusions returned to normal and all my joints stopped swelling. My joints have retained damage after 30 years of RA and I still get tired. But my life has improved.

I changed to weekly injections which still seem to work and are much more convenient. I hope it works for you, for me it is a wonder drug and has improved my life.

[hanlm in reply to davannh]

Hi davannh

Thank you for replying, that sounds promising. I'm pleased that you found your wonder drug, fingers crossed it will be mine too.

[Hidden]

Hi Hannah

Hoping that this kicks in for you. I chose certlizumab (CIMZIA) as my first biologica after a year of no results from DMARDS. I also continued with the Methotrexate 15mg weekly. I was told that CIMZIA can work within 12 wks. It was amazing but at 10 weeks I started to feel some good effects so I am hopeful.

All the best, Doreen

[hanlm in reply to Hidden]

Thank you Lucerito! Good luck with certlizumab, I hope you continue to feel positive effects from it.

[creakybones]

I had two infusions and then onto home injection. I started to feel a bit better by the second infusion. My crp went from 103 to lower than 5. I have been on most of the damards and quite a few biologics before getting tocilizumab. This has been a bit of a journey regarding treatments but at last have found something that works for me and hopefully will be the same for you.

Creakybones

[hanlm in reply to creakybones]

Hi creakybones,

Thank you for replying and I'm pleased it is working for you. My hospital have only just started offering injections for Tocilizumab so in order to avoid any delays they've started me off with the infusion but I'll hopefully be switching to injections after the first few infusions too. Did you find the injections work just as well as the infusions or do you notice a difference?

I've tried all the standard DMARDS too and then Humira which didn't work, and Enbrel which did keep my joints under control but also made me very sick and brought on ulcerative colitis. I tolerated it for 18 months but it just kept getting worse so I've had to switch. I'm worried a bit about side effects from Tocilizumab, especially nausea and vomiting (I also experienced this quite badly with Methotrexate). Have you had any problems with side effects?

xxx