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

oldestnewest
  • Hello

    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

  • 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...

  • Hi

    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 websitehttp://www.nras.org.uk/what-is-roactemra-tocilizumab- 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

    Emma-NRAS

  • 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.

You may also like...