Tocilizumab for RA

[MrsAouda]

Hello everyone! Happy New Year! I was wondering if anyone is taking Tocilizumab for their RA? I have just been prescribed monthly infusions following unsuccessful stints on Methotrexate and then Olumiant. I would love to know if it has helped you, what the administration process is like and if you have had any side effects. Thank you very much xxx

[Pat9442]

I have been on the infusions for 16 months now. Each one takes around 2 hours from arriving to leaving and I have found them painless and with no side effects - except maybe being a little more tired next day. The Infusion nurses are very good at putting the cannula in- even on me who has horrible little veins! I take light reading, matter, coffee/cold drink and chocolate biscuits but I find it far more interesting talking to my fellow sufferers!

You will be fine

[MrsAouda in reply to Pat9442]

Thank you so much for your reassurance. I am excited to begin and am keeping everything crossed that this will be the drug that makes the difference! I hope you are feeling better now too x

[Metal-legs]

I have been on Tocilizumab injections for nearly four years. Noticed an improvement very quickly and it has worked really well. I haven't had any side effects except low white count and neutrophils recently.

Hope you have great success with it. Best of luck x

[dwsurquhart]

I have been on toci monthly infusions for 3 years now. Each infusion takes between 45 min and 60 min.

I have had only 1 side effect with this drug and that is I retain water. I need a diuretic for a couple days after infusion then right as rain for the rest of the month. I started out at 600mg IV every 4 weeks, after a few months dropped it to 480mg, then dropped again to 400mg, now on 280mg every 6 weeks. I am tolerating it very well. It had taken a very short time to get my crp to go from 159mg/1litre of blood to less than 0.2. I have had a few flares but nothing too horrendous.

Hope this drug works for you as it has worked for me.

I started out on DMARDS (none worked just made me more ill) started humira and ended up dropping 57 pounds in 7 weeks and hospitalized for 3 weeks.

Got out of hospital and started Kineret (Anakin) which are daily subcutaneous injections for 49 days with zero relief. Then tried the IL6 drug tocilizumab (Actemra). And have been on it since. I am 37 months on it so far and trying different dosages and infusion times to see if I am able to reduce even more.

[Silverpixie]

I have been on tocilizumab for 2.5 years and it has been life changing after 4 previous biologics that didn't work for more than a few months. No side effects apart from occasional low white blood cell counts. I'm on weekly self administered injections which I arrange to have delivered to the local chemists . Hope it works for you

[fred42]

I started Tocilimuzab nearly 6 months ago (6th infusion this week), I am in remission for the first time in 8 1/2 years and after 4 DMARDS and 2 Biologics. It took 4 months to really kick in for me but it is life changing. I have monthly infusions, easy and painless and the Biologics ward and Rheumatology department in Bath are excellent . No horrible side effects like other biologics but the dose has been adjusted downwards a little to help the neutrophils.

I do hope this works for you too.

[Ozzy]

I started on infusions then onto weekly injections ,I prefer the injections but had no side effects either way. I did get a headache when having the infusion but I found that if I drank plenty of fluids before and during it stopped happening. Been on this drug for around five years and my Ra has been stable for 95% of that.