caret icon Back to all discussions

Rinvoq and Remicade successes, side effects pre and post use

Hi All,
I am looking for some help, guidance or opinion. I had gone on Rinvoq in March of 2023 for treatment of my UC. (25 year history of it) Early results were very positive, some fatigue, but stool and all gastro stuff was extremely positive. After about 9 months, my body went haywire. (skyrocketing liver counts, cholesterol, fluid retention, shortness of breath and ended up with multiple blood clots in both lungs) So I came off the Rinvoq with the "here we go again thoughts in my head". In talking with my Dr, we planned to bridge my UC, which we knew would flare again to trying Remicade. So we went a prednisone bridge and a taper and the plan next was Remicade. So I am supposed to start infusions next week. I am mentally shot with the on and off again symptoms/side effects and feel like I am ready to move ahead as with my UC symptoms are coming back and am also experiencing a lot of joint pain. (which seems to coincide with flares) So would love some opinions and thoughts on a few questions. Did anyone who tried Rinvoq and came off it, did any of your side effects linger as I have been of 3 months. (fatigue, upset stomach etc) For anyone who tried Remicade, did it work and how bad were the side effects? I have read about fatigue, upset stomach, and other side effects, but curious how bad it was and how long it took for infusion side effects to ease? I have been on and off Humira, Entivio, Prednisone, Rinvoq, and Sulfasalizine over the last 3 years. Sorry for being so long winded on this, but my head is spinning...... from all the different stuff that has been and gone on with my body.

  1. So sorry you are going through all of this. I know what you mean about feeling like your head is spinning.

    I tried Rinvoq. It made be sick immediately. It gave me fever and abdominal pain. After about three or four days of feeling awful, I stopped taking it and the symptoms went away within 24 hrs.

    My doctor then tried lowering the dose for me, but the same happened. I got ill again so we decided Rinvoq was just not for me.

    Have you talked to your doctor about Xeljanz. It is in the same class of drug as Rinvoq. They are both JAK Inhibitors. Maybe if you had success with Rinvoq with your gastro symptoms, Xeljanx may be a good med to try?

    I do hope you find there right medication soon. My heart goes out to you. This journey is not for the faint of heart.

    Best,
    Elizabeth (team member)

    Please read our rules before posting.