tocilumab reaction ?

lulubell69
lulubell69 Member Posts: 110
edited 6. Aug 2012, 14:02 in Living with Arthritis archive
Hi peeps
after having ra for 9 years and all treatments eventually failing, I have just had (Thursday) the first monthly infusion of tocilumab (?). Two days later I had the worst flare in multiple joints I had ever had. I screamed the house down even if someone went near me, when the dog nudged my elbow I thought I was going to pass out with pain. I had to lay perfectly still for hours until the flare went, nearly wet myself (ha) couldn't move to go to toilet.
Has anyone else ever had a reaction like this after an infusion or was it just coincidence. Going to let rhummy know today.

Thanks for reading
Les

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    That sounds like an awful reaction, you poor thing. These are very powerful med, I used to have infusions of infliximab but I never had anything like that. I am pleased you are gong to let the rheumatology unit know about this, I think they are the best placed to advise you. I hope things are feeling a deal better today. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Definitely the right course of action to ring the rheumatology helpline.

    That must have been scary. I’m sorry, I’ve no experience of tocilizumab but I’m pretty sure it’s not meant to do that to you. It might just have been about to happen anyway or it might be that you had some minor infection that you were unaware of when you had the infusion but these are just guesses. You are doing the right thing and I do hope it all eases off soon. Please let us know how you go on.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • PatriciaH
    PatriciaH Member Posts: 77
    edited 30. Nov -1, 00:00
    Hi lulubell :)

    I haven't ever taken tocilizumab but the 'flare' you describe is exactly what happened to me about two years ago. Not able to move because of the excruciating pain all over my body. It was horrendous and I have great empathy for you. Just like you, to touch any part of the skin, or anywhere for that matter, was absolute agony. I agree, getting to the bathroom was a nightmare!!! My husband had to get me out of bed and hold me up so I could try and 'toddle' - whilst I was screaming in agony. Sounds dramatic but it is true and my heart goes out to you having to experience this. Oh dear, you poor thing.

    Now, all I can say is for many, many months my 'flare' had been building up but I was actually waiting to go on a trial of tocilizumab (didn't reach the criteria in the end because I didn't have anti-ccp in my blood). It could be that this flare of yours was just a coincidence - had you been having many problems before this?? As the others have said I would definitely phone your rheumatology nurse to mention it. At least then they will be aware for the next infusion and monitor you even more carefully. The positive thing is your flare at this excruciating level didn't last. My hope is that you can get some relief very soon.

    Take great care.

    Patricia x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Lulubelle

    I really hope you managed to get hold of someone in rheumatology for advice because this does sound to me like a possible reaction to the drug. Thankfully I have never had this reaction to one of my RA meds but I have a similar reaction within a day or so every time I have the flu vaccine and when I mentioned it to the GP he said it was my wonderfully overactive immune system reacting to the vaccine. Maybe your body is having a similar reaction to the toc (although I hope not).

    Really hope you get some answers very soon.

    Tilly xxx

Categories