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UC Biologics not working

Hello.
I could do with some advice or any ideas you guys have.
I was diagnosed with UC approximately 18 months ago.
I've been on so many different treatments in that time.
I have been and still on Prednisolone.
I was put onto Biologics at the beginning of this year in the form of infliximab. 8 months later it turned out I was a Primary non-responder 🙁.
And so I was the put on ustekinumab (stelara) Now with my preds slowly being withdrawn, I'm in a flare again 🙁.
I've spent so so much time in hospital this year driving my stress levels sky high.
I am scared that now Ustekinumab doesn't seem to be working what's next?
Do any of you know of any other biologic alternatives?
I had an appointment with a Stoma nurse when I was in hospital and although the thought of being symptom free compels me, surgery and such a change scares the hell out of me!! Especially only being 39 years of age.

Your thoughts?

  1. @Unicorn 10,

    I know what it is like to hospital hop and be totally stressed out and on top of that just physically and mentally drained. Just know you aren't alone.

    In terms of other biologics, there are lots of options these days. Here is a link that goes over all the options: https://inflammatoryboweldisease.net/treatment/medications/biologic-therapies/

    Totally normal to be afraid of surgery. I am too. I understand the draw as some become symptom free after and have major success, however there is also the flip side where others have tremendous difficulty and the disease just spreads to other parts of the intestine.

    Just curious, how is your diet these days? Also are you taking other supplements or doing any other alternative therapies in addition to medication to help?

    I hope you feel better soon.

    Big hugs, Elizabeth (team member)

    1. @unicorn10,

      Keep us posted with how things go. Perhaps this next hospital visit will give you more answers and some relief. IV steroids always helped me tremendously.

      Deep breaths. Things will get better.

      Hugs,
      Elizabeth (team member)

    2. Thank you ☺️

  2. Hi @Unicorn_10

    Totally relate to the fear of surgery. I had my first stoma as an emergency when I was 19, and I have needed 2 since. My current one is permanent.

    I will say though, that having surgery before you're even more unwell is always a little easier to recover from, and gives you time to prepare if it is planned. I run the #IBDSuperHeroes Facebook group and we have a lot of ostomates in there, so when people have surgery coming up, it's good to see everyone jump in with words of wisdom!

    There are still lots of options:
    Tofacitinib (Xeljanz)
    Adalimumab (Humira)
    Golimumab (Simponi)
    Vedolizumab (Entyvio)

    Were you treated with Azathioprine (Imuran) or Mercaptopurine (6-MP) at any point?

    - Sahara (team member)

    1. Sahara,
      Thanks for your reply.

      It's good to know that there's so much support out there!

      I'm glad to see that there are potentially more biologics to try before opting for surgery!

      As per my last reply above, will be readmitted to hospital next week I think.

      I have previously been on Azathioprine but it had adverse effects on my Liver so I had to stop taking it 🙁

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