Tocilizumab not working- So What Next?

I was only diagnosed two years ago but I have already lost most of the mobility in my left hand and can hardly stand up long enough to take a shower. It seems that the drugs dont work for me. MTX makes me feel dreadfully nauseous, gives me flue like symptoms of aching all over and terrible fatigue. I have tried several different DMARDs and I’ve tried Humira. While I have no RA factor or even inflammatory markers in my bloods nothing seems to be working for me. Can anybody suggest what next? I’ve got an appointment with my specialist next Wednesday and would like to go in with some ideas before he shrugs his shoulders and tells me I’m a quandary again. Ax

8 Replies

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  • there is a family of these drugs.. it easy to tell they are a family they allend in mab..

    humira is adalimumab , rituximab is another, infliximab is remicade .have you tried these.. I havent tried biologics./ant tnf im on gold !! l also there is entanercept (enbrel) which I would like the chance of myself!!, and ankinra.. the safety profile of these drugs varies considerably as does their effectiveness but different drugs suit different people.. make the best informed choice available to you as an individual.

    have sent you a personal message also

    alison

  • Like Alison said there are still many more options for you to try so don't worry about exhausting treatments.

    Have you had ac Anti-CCP test? I believe this test gives a more accurate ra diagnosis.

    Try not to let it get you down its a matter of finding the right combination of drugs for you. I too went through many drug regimes, and still am, to try and find something that helps.

    Good luck

    mandy xx

  • my advice is try ant off the above which I have listed that you havent tried with careful thought and discussion with your consultant.. have heard from several sources and a paper that humira adalimumab often fails so perhaps not that one unless it is the only one left to try ..some more mabs are in development one has been withdrawn already at trial peroid stage hope this helps alison

  • (working for me great)

  • ps am using providing this information as part of my professional development pharmacy program.. any name will be annomised x

  • Hi

    I think the best approach would be a serious chat with your consultant to clarify where he is heading! Only two years of history and you have got through all these drugs without success? Has he done the anti-ccp to confirm antibodies? Has he done a full ANA profile to rule out other inflammatory conditions such as SLE, Sjorgrens etc. ?

    The more usual drug sequence is DMARDs in combination if required, anti -tnf such as Humira, Enbrel, Infliximab, Cimzia and the new Simponi, followed by B/T-cell therapies such as Rituximab and then if that fails Toculizumab. Beyond that drugs like Abatacept (if he can get the funding) and one or two others.

    Personally I might be looking to go back to square one and try some different combinations (I'm currently on second time round with some drugs!). Alternatively ask for a second opinion; it's your joints that are at serious risk of long term damage.

    Hope you get a result:)

    Lyn x

  • Agree with Lyn, a new combination and a long well thought out chat with your Consultant. Best of luck. Gina.

  • Many thanks to you all for your help, advice and support Ax

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