Crunch Time!!

Well it's crunch time for me on Thursday as it will 12 weeks since I started enbrel. I can honestly say that whilst I have had some benefits it's been hit and miss and I still have bad days where I can't get out of bed.. It's mainly my wrists and fingers at the moment so it will be interesting to see what the outcome of my blood results shows once I go see my rhuemy nurse on Thursday. This is my second anti TNf after initially failing on humira. I think they want to try rutuximab next.... I'm getting really fed up now and keep looking at all these tablets and crap that we have to take and wondering why when it doesn't seem to be working. Has anybody else failed 2 TNf,s?? Is there any light at the end of the tunnel

Ta for listening

Donna x

8 Replies

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  • Hi very sorry your having a hard time of things. I can't give you any advice on the tnf thing as i'm still on sulfasalazine.

    It seem to me RA and its treatments can be a bit hit and miss. What work for one dosen't always work for another.

    Its hard to do easy to say be patient lovely and eventually your team will find the right drugs for you.

    Hopefully one of the people who do take tnf will help you and tell of there experience take care xx

  • hi

    i hailed on Humira after 3mths on it am now on Enbrel take my 4th injection on wednesday if im feeling better (ie cold sore throat)

    hope you find one that works long term xxxx Ali

  • hi donna sorry enbrels not working for you. it worked really well for me for about 9 months then just stopped. I then had humira but was allergic to it so only had one injection. I then got put on golimumab which gave me drug induced lupus so i came off that after 2 months. I was put on enbrel again but it didn't work so i had rituximab which unfortunately didn't work either. I'm now on tociluzimab which is working. Keep going, something will suit you eventually!

    Mary

  • I have been on Etanacept injections now for nearly 3 years. The improvement is gradual but builds up so that from having more wipe-out days than good days I now rarely have a wipe-out day. If you met me you would hardly know that there was anything wrong. The Sjogrens is in fact my greatest problem. Stick with it and most important have faith in it.

    Diana

  • Hi Donna

    I had no luck with enberel gave it 22 injections and although my blood at the beginning were hopeful they soon started creeping up. Now gone back to a DMARDS Leflunomide third week in and nothing new to report. Like you I hope to find the one soon! Good luck.

  • Thank guys for all your responses. I will keep you posted with how I get on on Thursday. Just one more question for those who have tried enbrel. Did you sweat a lot and particularly through the night? And my nose is always cold & runny!!!

  • Hi Donna,

    Sorry to hear your struggling.

    I've so far failed on four anti tnf drugs, before them failed on 3 dmards.I've started my 5th anti tnf drug a week ago, however now my uveitis has flared really badly, so waiting to find out today if my cimzea has to be stopped or not.

    Good luck and hope you have better luck than me :/

    Julie xxx

  • Hi Donna,

    I was also on enbrel for 3 months and if anything i felt worse than ever while on it and my ESR was much highter. I am now on rituximab and although it took a while to work i do feel so much better now. I would think if you haven't felt a marked improvement after 3 months then i would consider stopping it and trying something else. Rituximab works in a different way from enbrel so you would most likely get a better response from it. Good luck x

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