i have been on etanercept for last 18 months now doc wants me off as not working as well but i feel ok ish but been offered new meds

the new drugs are done with introvenous drip over two weeks ie two days and should help but i dont know where to go and unsure whats best for me.i feel its manageable just now but due to the swelling in hoints etc thats the issues can anyone help me or tell me where to go to get more help.

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  • Steven you don't say which drug they are suggesting.

    I'm on rituximab which is given by 2 infusions two weeks apart (at the hospital I am under) but of course there may be other drugs given like this.

    3 places to get some more information/help could be:

    NRAS help line (unfortunately I cant give you the telephone number as I dont know it myself), or you could try ringing your rheumy nurse and ask to talk to her and lastly your GP.

    Of course you could also google it (or put the name of the meds in the 'search' box above which should bring up previous questions and advice given) on here.

    Must admit it is daunting but best of luck

    Judii

  • Hi Steven

    It sounds like you are referring to rituximab. There is an article about this on our website:

    nras.org.uk/about_rheumatoi...

    I think you need to have a conversation with the rheumatologist or rheumatology nurse though to see why they think you should change medications if you feel pkay. It could be that although you feel alright your inflammation levels are raised or your disease activity score is higher than they would like, which would indicate that it's not working well enough.

    You are also welcome to call the helpline, as Judi suggested. Our number is 0800 298 7650. We are available Mon-Fri, 9.30-4.30.

    Kind regards

    Victoria

    (NRAS helpline)

  • Forgot had written here . Just seen your reply folks nearly a year later . Ah well think reason they want me off injection is because it's not doing what they expected and yes my rheumatoid is very active and aggressive . It's took three years get me on injections as struggle with needles but am okay with it now. I have constant pain etc but I feel my two consultants don't listen to me. It's all rather doom gloom you know . But I feel managing okay yeah have bad times etc but that's life with this illness . Just wish someone was able to help you through it and explain in plain English why etc but they don't . But due back at clinic next week commencing I know am being taken off Enbrel . It's like let's try these treatments on him nothing else seem be slowly down progression .

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