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Decision looming

Hi everyone, and belated Happy New Year. I've not been on for a few months, but have appt with my Rheumy next week, to decide whether to try Tocilizumab. Not been on any specific RA drug since stopping Humira a year ago - it wasn't helping. She suggested trying Tocil next, but there was so much else happening that I put it off, and hoped things would improve, or at least not get any worse. But I can't deny that I'm much sorer, and fatigue seems worse as well, so I suppose trying another drug is only sensible. Have been looking at my NRAS booklet on biologics to refresh my memory, but its at least 3 years old - is there anything new I should know about? Is Abatacept still prescribed? Rheumy did seem to prefer Tocil over Abatacept but I can't remember why. Am dreading all the side effects already! Does anyone know if you now get Tocil in a pen-injection thing, like Humira? If anyone's on Tocilizumab and had good results, I could use a little encouragement! Thanks for reading. S.

10 Replies


Sorry can't help with your question as I've no experience of those drugs. I saw you had no answers for quite a while and didn't want you to feel ignored.

Hopefully someone with experience will come along and give you a proper answer.

Hope you are OK? And that your treatment works out well.


Thanks Hector!


Hi I was started on tocilizumab in May 2015 after failing on both Enbrel and Humira. I had a massive flare because my immune system had developed antibodies against the Humira. I had an exceptional reaction to my first injection of toc and had improvement after just 24 hours. The rheumatology nurse was as surprised as I was at how quickly it worked.

It doesn't come as a pen injection unfortunately and is in a proper pre-filled syringe.

Side effect wise I had a big injection site reaction where my leg ir stomach would go red, hot and itchy but I found taking a benedryl before injecting helped and it settled down after about 3 months. Weirdly I've found that it still does it if I inject in my leg but not in my stomach. The only other thing is I bruise much easier and will bleed when I floss or inject my mtx etc.

I hope this helps. Ruth x

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Thanks Ruth, good to hear it's helped you. VERY unsure whether I could handle an actual syringe, never done that. Has it helped from a fatigue point of view, as that is prob my worst symptom?


I'm not sure if it has or not. I work full time as a Reception Teacher and have a 40 minute commute to work, plus I don't sleep well so it's hard to say if it's arthritic fatigue or just general tiredness. I do manage to go to the gym at least 3 days a week as well so I would guess it does. I don't have to sleep when I get home. I'm not good with a syringe either so my husband does it but i wold probably could do it myself if I had to. I find it hurts less than the metoject pens I use for my mtx and the needles are ones that pull up out of the way when they are finished with.


I agree with Hector - I know nothing about any of those, but wanted to make sure you at least got a couple of answers...



I have a monthly infusion of Abatacept. It takes about an hour at the hospital. I was doing really well on it until a very heavy cold sent my liver function crazy. Blood results are now back to normal but I have to stay off all my meds (mtx, hydroxychloroquin, folic acid as well as the Abatacept) for eight weeks to allow my liver to recover.

One tip I was given by a phlebotomist friend is that all injections are easier if the skin is warm. She suggested doing it straight after a warm bath or shower. It works!

I do hope you find something that helps.


Thanks for your reply, the whole liver thing is one of the worries for me about these drugs - and you are on three at the same time? - yikes. Certainly hope you fully recover. Good tip re injection, will bear that in mind!


Hi Scotslass333,

You can read information on Tocilizumab on our website we haven't updated our Biologics booklet as we're working on a new one for all RA medications which hopefully will be out later this year.

In the meantime, if you have any concerns at all, do give the NRAS Helpline a call on 0800 298 7650 (mon-fri 9.30-4.30pm).

Kind regards



Thanks Emma. I've already got a leaflet about Tocilizumab (and all the rest!), but it's always good to hear from other users too.


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