New here and just started Actemra

cosmo11 Member Posts: 2
edited 27. Mar 2016, 21:19 in Say Hello Archive
Hi there! This looks like a great forum - I wish I'd found it years ago.
I was diagnosed with RA way back in 1984 and have been relatively lucky with meds along the way - from gold injections though others to Enbrel which worked brilliantly until about a year ago.
I tried Orencia, but not much luck with that. On Monday I had my first infusion of Actemra. No change the next day, but on Wednesday I woke up feeling dreadful and it's not changed since.
It feels like a mega flare where every joint and muscle is painful and tender. I've done a bit if online research but this doesn't appear to be a recorded side effect, so I'm wondering if anyone else has experienced this? If so, did it go away and after how long?
I realised I might have to wait for it to work, but didn't expect to feel worse!! Fingers crossed this is only temporary
I look forward to hearing anyone else's experience with Actemra.

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello Cosmos11,

    Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes

    Mod Christine R
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. Actemra is tocilizumab, yes? It could be that the first 'draught' of the med came too late because a flare was imminent, were you off all meds for a while before you began it? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
    Hi there Cosmo11. I'm one of the lucky ones for whom the DMARDS work OK. I'm inclined to agree with DD but why not ring your rheumatology helpline for advice? Maybe you're feeling a bit better by now. I do hope so.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright