Has anyone had good results with Abatacept?

I had my first infusion on Friday 7th. In the afternoon I felt very agitated and couldnt sit still, I wanted to throw something across the room!

Saturday, Sunday and Monday morning I had stabbing pains all over, (the only way I could describe it was someone had a voodoo doll and was sticking pins in it. A bite on my arm with hadnt bothered me, was now extremely sore.

By tuesday, I was getting painful joints again and today I feel like I have the flu.

I know Abatacept takes a while to work, but I'm thinking that I dont want another infusion on the 21st.

2 Replies

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  • This sounds like one of those occasions when you need to phone the rheumatology nurse specialist / helpline. You should have a named nurse who is responsible for you whilst you are on anti-tnf. If you don't have these numbers then phone and speak to your consultant's secretary and explain the reactions that you are having and your concerns about having another infusion - you need to make the rheumy team aware of what is happening.

    Good luck with this,

    Cece x

  • Hi Cece,

    Thanks for your reply. I have an appointment with the rheumatology nurse on Wednesday, so figured I would tell her about it then as its two days before my next infusion.

    I have been on rituximab for a few years and had some good results, but the last one didnt work at all, although I didnt have any weird side effects with that.

    Claire

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