Toczililumab/RoActemra

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NicNac11
NicNac11 Member Posts: 5
edited 27. Aug 2015, 09:54 in Living with Arthritis archive
Hello,

Hope this finds you all well, although its a miserable rainy day here in the shire.

Anyhow, I am starting Toczililumab/RoActemra next week as weekly injections and am trying to find out if anyone else is on these? It would be great to hear stories from people and not just read medical notes on the internet. Have you found it works? I have been on Enbrel for 9.5 years and but this isn't working for me now. I'm having a flare - CRP in June was 196 instead of regular 14 so something needs to be done. I've had a depo injection and that has helped pain and stiffness but i am still tired and depressed and get occasional fevers - one or two a week now. Enbrel really helped settle my arthritis when I first started on it but I have to say that I am really nervous starting on this new drug. Therefore any info would be great.

Thank you x

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Welcome to Arthritis Care Forums, NicNac11, from the moderation team.

    As moderators we are here to help with any problems you may have using the message boards.

    Our members have a wide range of experiences of arthritis and living with the condition. I am sure some of them have personal knowledge about the drug you are referring to, hopefully someone will be along soon to talk to you. In the meantime please do join in wherever you like, you will be made very welcome.

    I look forward to seeing you posting.

    Best wishes

    Moderator AC
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I cannot help because this is one I've never taken but I can understand the nerves. Enbrel and me were not friends so I was moved onto injected meth and humira. So far, so good but not in terms that those without arthritis would understand.

    To go from a long period of success to starting all over again is a challenge but I hope it works (define that how you will) and that things are soon brought under proper control. Please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,725
    edited 30. Nov -1, 00:00
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    S orry about the flare, NicNac. I've never had this but maybe if you put the name in the Arthritis Care search engine some former threads would come up. Good luck with it anyway.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • premierscfc04
    premierscfc04 Member Posts: 57
    edited 30. Nov -1, 00:00
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    Hello NicNac

    Sorry to hear about your flare..

    I have been Tocilizumab 4 weekly infusions (sorry not Self Inject yet) for 2.5 years now and my CRP/ESR returned to normal ranges after the second infusion. Unlike Embrel (over 9 years) I've had no side effects and have only missed a couple of doses due shingles and an operation. Like Embrel I always now when I'm due my next treatment.

    Good Luck, hope it works as well for you.
  • NicNac11
    NicNac11 Member Posts: 5
    edited 30. Nov -1, 00:00
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    Thank you for your messages and well wishes. Depo jab is helping slowly but still have an irritating cough which will hopefully clear once CRP is lowered.

    Premierscfc04 - did you have any side effects when started infusion? I'm worried about those.

    Xx
  • premierscfc04
    premierscfc04 Member Posts: 57
    edited 30. Nov -1, 00:00
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    I do go light headed when the infusion is going in over the hour. I'm always very tired for the rest of the day after the treatment but I normally feel much better the next day.

    Compared with Embrel its nothing as I had skin rashes and migraines which both stopped after the injections stopped.
  • Patcher
    Patcher Member Posts: 18
    edited 30. Nov -1, 00:00
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    Hi NicNac
    I have only just joined forum and noticed your post. I have been on Tocilizumab for about18 months, self injecting for last 8. Only side effect I have had has been some itching at injection site for about 24 hours which is worth putting up with for the benefits. For first time in over 10 years my inflamatory factor is in normal range and RA is under control. Have only had 2 flare ups in last year, one due to catching a cold firing up immune system and the other after I spent day painting bathroom and overdid it, so can't complain. Hope you find this works as well for you.