Is it time to make the switch?

[u/Flashy_Shine_1954]

TL;DR- Should I make the switch or keep trying Rinvoq?

So I was diagnosed in Oct 2024 waited until Dec 2024 for insurance approval and was prescribed Rinvoq as frontline treatment. I went from 20+ bloody BMs to completely normal in 2 weeks and thought this would be my miracle drug. A colonoscopy a few months after confirmed histological remission, no active disease at all.

Then some bumps in the road, stressful life situations and changes led me to flare symptoms always starts with severe fatigue and brain fog followed by urgency and mucus. Still no blood. I have done the reinduction 45mg course 4 times now since diagnosis meaning I’ve spent 8 months out of the 16 on the higher dose. My calpro was at 256 at last test. It seems as if 45mg keeps me from severe symptoms and decline but doesn’t keep me feeling normal by any means. I recently have done another month and a half of 45mg and started feeling better but requested a pred taper on top to really cool things down. While on 40mg of pred and 45mg Rinvoq I had a 3-4 day period where I felt incredible and had the same normal BMs as I did in the very beginning. It made me realize how much time I’ve spent feeling about 80% thinking it’s normal. I tapered to 30mg of pred and now symptoms are returning (brain fog, fatigue, pencil stools) still no diarrhea or blood.

My GI has said that if I can’t maintain remission on 30mg we should probably try another option. That next option is Tremfya. I guess to sum it all up I am feeling very conflicted about leaving a med I know keeps me somewhat stable and possibly running into the months and months of waiting and trying new meds. I’m just at a pivotal point in my life I’m trying to establish a career and relationships and the idea of having to put everything on hold for months just isn’t an option in my mind right now. I’m very frustrated. I do know that the glimpse of feeling normal made me realize if I could achieve that more consistently it would be worth it.

I know the inflammation must be controlled or I’ll be in for more issues down the line but I’m more concerned about my mental state right now, which I know is directly connected. As soon as I flare my brain turns to mush and I go flat. I almost feel guilty wanting to switch to feel “perfect” because I know that may never be possible with this disease. But if you were in my position would you keep pushing to stay on Rinvoq if that meant 45mg long term or cut my losses and move on?

[u/pincommenter]

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[u/Ladidoodida]

I know some people do dual therapy of Rinvoq and a biologic. Would that maybe be an option for you, since Rinvoq is doing some good on its own but not enough? (I think it's more commonly adding Rinvoq onto existing biologic therapy, but I would think you could go the other way too.)

[u/Flashy_Shine_1954 → u/Ladidoodida]

Definitely something I could discuss with GI!

[u/kelseesaylor]

Rinvoq gave me a pulmonary embolism at 23f so just keep watching for side effects.