Anyone taking RoActemra??

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kathe
kathe Member Posts: 183
edited 21. Jun 2013, 09:11 in Living with Arthritis archive
Hi
I been away four sometimes ... Having My exams and work and so many things... The exams Went well..
I have been on enbrel, cimzia and no latest Orencia bout none of the is working.. Enbrel did work four a will, but not cimzia that youst made My so sick.. Orencia that I have got by infusion the last 6 months I havent feelt nothing after the infusions, some side effect but not helping My artritt..
So was in hospital yeasterday and they desided to start My on RoActemra infusions tomorrrow.. That is 1 infusion a month.. And hopefully I can stopp metex and prednisolon if it works..so relly have hopes..
Because I'm Loosing alot of hair so really hope that this is working so I can quit metex..

any one that take RoActemra?? Some one that take it whit out metex??
Kathe

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  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
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    I am taking tocilizumab (RoActemra) and have just had my fourth infusion. For the most part it seems to be doing it's job. My best weeks are the second and third as it wears off during the last week and then takes a bit of time to kick in again. I do get side effects from it: it makes me feel nauseous for a week following the infusion and gives me tummy trouble for the same length of time. My fatigue is much better, my stiffness is greatly improved and overall my joints are doing better. The only joints it doesn't seem to touch are my feet and my right shoulder. My improvement wasn't instantaneous. It's taken the full four months to get to where I am now and I still have to take my MTX and hydroxychloroquine. If I miss those, I know about it.

    As an aside: my hospital will not prescribe tocilizumab unless you are on MTX, and then you have to stay on MTX for the duration of your treatment. That might just be my area though.

    Good luck with it.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Kathe! :D Hello, it's lovely to hear from you again - life in Norway has been busy, yes? I hope you will soon be able to have a break from it all, maybe a holiday?

    I haven't had the drug you mention but I know that over here it is the norm to have an anti TNF supported with methotrexate. Having said that I took enbrel without meth, so who really knows? :? I am so sorry to read that you are still having such a great struggle with it all and I truly hope that you soon gain some respite from it with a med that actually helps. That would be good, yes? I send some hugs (((()))) and it's great to see your name again. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,715
    edited 30. Nov -1, 00:00
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    Hello kathe. I've been thinking of you and it's lovely to see you again. I'm so pleased the exams went well. You certainly deserved that.

    I've no experience of RoActemra but I very much hope that this will be the one for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kathe
    kathe Member Posts: 183
    edited 30. Nov -1, 00:00
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    BAD news!!!

    Got in 30 minutes of my infusion of RoActemra and then my throat started to close, I was feeling fine before I came, but suddenly it was difficult breathing so they had too stop the infusion....

    And they did not wont to give me more to day then...Because it is real serious when the throat are stating to close..

    So now I have to wait and see what they come up whit until the next time I`m going there ..That will be at the 18 July ...Really hope there are some more meeds..So tried and frustrated ... Feel that the doctors dont see it ...Real bad day..


    I was on an holiday in the beginning of june....
    Tomorrow I going out to sea, have been home on sick days now, but it will bee great coming out there tomorrow and not have to think of the bad infusion more..Really hate all of this. Have tried enbrel,Cimzia , orencia and now roacterma...Really hope there are something else..
    Had to go up too and higher dose of metex to until the next time...That was not what I hoped four at all..!!!

    having a bad day..
    Kathe
  • stickywicket
    stickywicket Member Posts: 27,715
    edited 30. Nov -1, 00:00
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    Oh dear! That's not what you needed. Maybe they'll try to put it in again but more slowly. I seem to remember someone saying they had this done.

    I hope the increased meth helps although it's not what you wanted. I also hope that going back to sea will help though the workload will probably be great.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh dear, that is not good news at all, I am so sorry. :( These are very powerful meds and, sadly, they don't always suit us. I wonder if they were giving it to you too fast? I know that that can cause trouble. I realise that you are pleased to be going back to the rig but don't push yourself too hard, your body can only take so much. Take care and keep in touch. ((((( ))))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,429
    edited 30. Nov -1, 00:00
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    Oh Kathe

    You poor thing - you are being very unlucky.

    I hope the docs do have another idea up their sleeves for you. I am glad that you were so closely monitored and looked after as that reaction did sound scary and dangerous.

    18th July must feel a lifetime away :(

    love and ((()))

    Toni xxx
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