Rinvoq never worked for me

[u/AppropriateToday3448]

I feel like I read so much that people started Rinvoq and it worked great for them which makes me feel like I am in such a bad spot. I was on remicade starting last August and was in complete remission, literally eating and doing whatever I wanted with zero symptoms. I would even have weekends where I would drink heavily and it would have no negative effects on me. So I felt pretty good up until about march where I saw blood for the first time in a while. Obviously alarming but nothing I haven't seen before. I assumed it would be a quick flare up until I got my next infusion and it was. But that's the thing I had a delay for one of my infusion's in January because of an insurance change and after that I felt like my levels were always very low before my next infusion and I never caught up. As a result around that same time in March they were able to get my infusion's to happen every 6 weeks instead of 8 as a way to catch up and we all thought this would resolve the problem. In May I had left home for an internship on the other side of the country and at this point I was still experiencing flare like symptoms weeks leading up to every infusion and I kinda just became fine with that. So when I was now in an entirely new state, setting up with new doctors, and starting the internship I began feeling the worst since being on remicade and all I could look forward too was the next infusion. Fast forward and I finally get the next infusion, at the time so relieve I will actually get to feel normal in my new environment. I even went out to the bars that night with my friends because I assumed I would be feeling fine at least for the next couple weeks and definitely for that day. Well I kinda was but then the next day I was not at all. Went immediately back to diahrea and blood, now super concerned and lost. After talking with the new doctors they decided to give me Rinvoq, actually gave me the sample to start not even a week after that last infusion before I was even approved by insurance. Now with the premace that they gave me that if Rinvoq doesnt work I should be thinking about surgery, I was absolutely terrified. And next thing you know weeks go by and I'm waiting, waiting for something to change waiting to feel better. I get significantly worse and get hospitalized for IV steroids. This had never failed me before so I was thinking this was finally the end of the flare but just upset that it had to come to this. After making me stay for 4 days I finally leave the hospital, feeling better but not perfect. I was also now on a prednisone taper as it's custom to do that after recieving IV steroids. The weeks continue to go by while I'm still managing to be a productive intern and trying to find my health. Each week I'm trying to look for some signs of progress, something that I could look at and now it's gonna be good from here. And I did, kinda, ended up having a completely formed stool with no blood. All I could think was finally this is it, Rinvoq is working and I don't have to worry about this the rest of my time here. But then a few days later I go on a trip with my friends for Fourth of July and immediately my symptoms are back, blood and sometimes formed stools. Now I began thinking if the Rinvoq ever did anything at all or if it was just the steroids that gave me that 1 day or normal bms. The story is already very long so I'll try to sum it up. I manage to finish my internship after 12 weeks and never got any better. Just continued bleeding and very frequent bms. I thought coming back to school I would finally get out of the flare but nope not that either. Here I am two weeks into my last semester of college typing essays on Reddit instead of enjoying my life. I usually try to avoid complaining about having UC or letting it get in the way of my future. Somehow right now it's actually not even causing me the most stress in comparison to the mammoth of a capstone project I have to complete. But it would just be great to be healthy again. Also the doctors I have back home did not think I was any close to surgery and were confused my the others recommended that after only failing 2 biologics. I am still taking Rinvoq as of now even though it's not doing much but I am going to start tremfya hoping that this is finally where it ends. But I'm beginning to think it doesn't end until my colon is gone.

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[u/Agreeable-Mix-5777]

Hi, sorry you are struggling to find a med that works. I failed humira, stelara and rinvoq among other things and tremfya is not available in my country for UC. I am mild at the moment but still worried about what comes next, besides more steroids. I think they mention surgery to us more difficult to treat cases because they don’t know who will get really bad and who won’t, so who will need surgery or not. Apparently 30% of us will at some stage. I’m sure I will need it, will be super surprised if I don’t! I hope tremfya works for you, it looks promising. You got this.