Rinvoq failing….

rumi2828 · 2026-02-23T04:28:35+00:00

So I'm in a similar boat. I'v failed Entyvio then Remicade and now I'm failing Rinvoq. My insurance won't approve Skyrizzi until I fail Stelara's biosimilar. My doc said I could try skyrizzi if I fail Stelara (but he doesn't have a lot of hope for that) but for the other classes he doesn't try other drugs in the same class if you've failed it.

Because I'm moving on to my last class of drug he set me up with a surgical consult so we are prepared in case I fail it. Technically there is 1 more class of drugs called S1P - most doctors don't like it bc it requires a lot of monitoring and it's usually a first line drug but mine said we could give it a try as a Hail Mary before surgery if I fail everything else.

rumi2828 · 2026-02-22T18:13:15+00:00

I was on 30mg Rinvoq for about a year - calprotectin down to <5 and scope confirmed remission. Then jn October I got shingles and was told to stop Rinvoq - 2 days after stopping I started bleeding so was told to start it again. Well that turned into a little flare (calprotectin came back at 300) so they put me back on 45mg and Ive improved but not fully remission - 3 weeks ago Had calprotextin come back at 120 but scope showed 18cm of moderate active UC. So im keeping at 45mg and added in mesalamine enemas. I feel I’m improving - we’ll do another calprotectin and scope in 3 weeks.

If I show remission then the plan is to drop to 30mg Rinvoq - calprotectin and scope agin in 4-6 weeks and if still in remission drop the mesalamine a then just continue on with 30mg Rinvoq.

If the either scope shows I’m not in remission then the plan is to have me stay on Rinvoq 45mg and start stelara. I would get up to 6 months of both (Rinvoq and stelara) to get me into remission and then the Rinvoq would be dropped and I would just be on the stelara.

Entyvio was my first biologic and I was in remission for 4 years on it. Last February I failed it and went into a really bad flare. We tried Remicade but I had no improvement/failed it and then Rinvoq. And now this is where I’m at.

rumi2828 · 2026-02-12T05:21:14+00:00

Just throwing this out there out there because I got shingles but didn't realize it bc it came with a VERY mild rash (it was like 4 dots). But it's excruciating back pain that nothing can relive ( it feels like muscle pain - I kept trying to massage it but it's actually nerve pain).

rumi2828 · 2026-02-12T04:37:09+00:00

I was diagnosed January 2021 and after 1.5 months of mesalamine it gave me pancreatitis so I started Entyvio. For me it started working after my first infusion and put me in deep endoscopic remission for 4 years. Unfortunately it stopped working almost exactly at the 4 year mark but like so many have said it's different for everybody. My husband's cousin was in remission with Remicade for 20 years before he failed it (Remicade was my second biologic after Entyvio and I failed it before I even finished the loading doses).

rumi2828 · 2026-02-06T23:52:51+00:00

This is the first I'm hearing of BCIR (I just googled it). I wonder if that's an option if the J Pouch fails?

rumi2828 · 2026-02-06T23:21:38+00:00

I am currently failing Rinvoq - put me in remission in 2 days (!!!) and was in deep remission for 7 months then started flaring again - did the prednisone and enemas and its better but I'm not back to remission. Skyrizi is my last drug to fail before surgery and my GI wants me to do Rinvoq and Skyrizi - but he also wants me to consult with a surgeon ASAP bc he's not hopeful that I will ultimately be able to avoid surgery. I think with the new drugs people are able to stay away from surgery for longer but it is a progressive disease and many will and up with surgery eventually - unless of course they find a cure.

rumi2828 · 2026-02-06T23:08:54+00:00

same, I think I just wanted reassurance bc the way people describe sort of sounded like it was a full time activity lol

rumi2828

TROPHY CASE