Tocilizumab?

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Becky88
Becky88 Member Posts: 96
edited 31. Dec 2016, 15:05 in Living with Arthritis archive
Has anybody out there ever been on Tocilizumab? I might be starting it soon so any advice about how you found it/side effects, would be greatly appreciated. Many thanks.

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Anny posted on Nov.21st about starting tocilizumab, her thread is not that far down the board. Many on here have taken it but, as I told her, I haven't so cannot help either of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • merri
    merri Member Posts: 190
    edited 30. Nov -1, 00:00
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    I was on Toc for over a year, is there anything I can help you with?
    https://forwhenlifegivesyoulemons.wordpress.com/
  • Becky88
    Becky88 Member Posts: 96
    edited 30. Nov -1, 00:00
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    Thank you for your reply. I have an appointment next week and I was wondering whether I will be offered the infusions in hospital or if I will have to self inject. I am on Humira at the moment and the side effects haven't been too bad. How have you found the side effects of Tocilizumab? I would appreciate anything that you can tell me. Many thanks.
  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
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    Sorry, I can't help as I've never done tocilizumab. My impression was that it was always by infusion but I could be wrong.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Pheeny
    Pheeny Member Posts: 22
    edited 30. Nov -1, 00:00
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    I went on a clinical trial about four years ago and was assigned to the weekly injections not to the four weekly infusions. At the end of the trial the injections were not yet authorised and infusions were offered. The point of the trial was to ascertain whether the injections were viable as a home treatment, the drug itself had been proven. Unfortunately, the infusions didn't suit me although they were very effective at lowering ESR etc. Fortunately, a few months later the injections were authorised and I resumed them. I have been on them since then. Neutrophil problems were resolved by dropping a sulphasalazine tablet and laying off the injection for a short time. I took myself off the infusions and I was offered half the dose which may have resolved the problems I was having. I never got to find out as the injections became available soon after. Because it was a trial I never went through the ritual of trying and failing other things first so can't compare.
  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
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    That's a very useful and positive first post, Pheeny. I'm sure the info will be helpful to others. Thanks :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Becky88
    Becky88 Member Posts: 96
    edited 30. Nov -1, 00:00
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    Many thanks to everyone for their kind replies. They are always really helpful and very much appreciated.
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