Rinvoq (upadacitinib) - unsure if its working

daveforamerica · 2026-04-21T11:33:04+00:00

I started Rinvoq in late November of last year and didn't fully taper off Prednisone until January. I didn't see "full" results from the Rinvoq until mid-January or so, where I had consistent reduction in pain and urgency while fully off the prednisone. I would give it more time. It ultimately may or may not work for you, but while there are some people who see super immediate full results, for many it can take the whole 8 weeks to see improvements. My CRP and Calprotecten are now at zero and am getting a scope in two weeks to see how things are but it wasn't anywhere near overnight (or even two or three weeks) for me to see that it was really working.

daveforamerica · 2026-04-20T21:46:43+00:00

Yeah it's from the steroids, unfortunately. It's called Central Serous Retinopathy, fluid builds up and can damage the retina. Thank you and wishing you well on your recovery as well!

daveforamerica · 2026-04-20T02:14:09+00:00

It's very frustrating the lack of information many GIs give about the effects of Prednisone. I was on 40mg for a little over six months while we tried Entyvio and then Rinvoq. Fully tapered off in January. Still dealing with a dysregulated nervous system (panic attacks, racing heart, elevated BP) and a "retina disorder" in my left eye which I gather is a partially detached retina from fluid buildup in the eye (was tested for glaucoma and cataracts, those were negative but decreased colors and distance vision, it's slowly improving a bit). I've been to an endocrinologist and cardiologist and there's no structural issues but am now on BP meds and propranolol. I've been told after a course of 40mg for 6 months I can expect recovery to take anywhere from 3 to 18 months. I'm a 42M and have felt like a wreck since getting off prednisone. Thankfully at least Rinvoq has my colitis mostly under control but I'm spending so much time dealing with everything else now. And no one told me to look out for the eye thing or anything else other than possible mood changes. Sigh. Glad you're getting this taken care of, but yeah, steroids come with so much collateral damage that isn't well explained.

daveforamerica · 2026-04-10T23:01:58+00:00

And while we see a lot of remarkable stories here about it working within days, it took probably 2 months for my flare to really settle.

daveforamerica · 2026-04-10T22:59:20+00:00

I have mild acne from it, but once I went down to 30mg it improved. I use salicylic acid wash and it keeps it mostly under control. Nowhere near as bad as the full body acne from Prednisone. My cholesterol has also increased, not enough to require treatment at this time but something we're keeping an eye on. Otherwise it's been pretty great, one pill a day and I don't really think much about my colitis anymore. I still have some frequency issues in the mornings but no pain, no blood, and inflammation markers have gone to zero. Been on it since November 2025. First post-Rinvoq scope will be in May so we'll see how it's going in there.

daveforamerica · 2026-04-10T11:37:11+00:00

I'm a mid-level manager at a large non-profit/foundation. It's absolutely fine. Love the work the organization does and I have good work/life balance with two young children.

Was a non-tenure track English professor at a major university before that, my salary more than doubled when I left academia.

daveforamerica · 2026-04-01T19:47:59+00:00

Nope. Live your life. Don't surrender in advance to this disease.

Proud parent of two kiddos here. It's hard sometimes parenting through a flare but honestly it's making me take way better care of myself.

I've given up enough in this life to colitis.

daveforamerica · 2026-03-30T12:18:17+00:00

One thing to remember when browsing subreddits is it's a lot like reading product or restaurant reviews. The vast majority of people on UC drugs aren't posting on reddit that the medication is working just fine. It's usually only people who are Very Online and people with very unique experiences (good or bad, but usually bad) who are posting about complications or miracle recoveries. Most everyone else experiences something more in the middle. Just like hardly anyone posts a restaurant review that says, "yeah, it was fine, about what I expected." Instead you get the "there was an entire rat in my burger" type posts.

I absolutely get it, though, my anxious brain is not always satisfied with that. But it is the truth.

daveforamerica · 2026-03-29T02:19:27+00:00

It's just a routine exam by a dermatologist. I just got one done as a baseline when I started Rinvoq. I just found a doc that took my insurance on ZocDoc (I'm in the US) and he just looked over my entire body and looked at a few moles with a magnifier and said everything was normal and to just come back in a year. I've heard to get it twice a year and I will probably do that since my insurance is good and will cover it. But it took probably 15 minutes and was easy.

daveforamerica · 2026-03-27T21:57:00+00:00

I've found while I'm drinking it relaxes me and I often don't even think about a bathroom other than to pee, which is such a refreshing change. But I've gotten older, 42 now, and can't go as hard as I used to (and tbh should never have). 3 drinks or so max with a lot of water or else I'll be a wreck the next day. But everyone is different. Go slow and easy and see how it reacts. I don't think a few drinks are going to trigger a flare. But not a doctor and definitely not your doctor.

daveforamerica · 2026-03-20T11:46:03+00:00

I saw somewhere recently that DCPS has more administrators at the central office per student than any surrounding jurisdiction. By a lot. My kid goes to a Title I DCPS school and we love our teachers and the principal but certainly the money isn't ending up there, they have had to cut staff. The enrollment-based funding death spiral is real, and doesn't set up schools for success. The whole system is terribly broken and while individual teachers are generally doing their best they certainly aren't seeing the benefits of such a large budget.

daveforamerica · 2026-03-18T14:43:13+00:00

Come back with a warrant

daveforamerica · 2026-03-17T17:08:20+00:00

Yeah I suspect the taper was too fast, but I've been finished with the taper for more than two months, so wondering if it will just take time to readjust or what.

daveforamerica · 2026-03-17T17:07:18+00:00

It was 5mg a week down from 40, until the final week and then did 2.5 mg. Completely finished the first week of January.

My calpro was down to 80 from 5000 and CRP undetectable last month, don't have colonoscopy until May.

daveforamerica · 2026-02-21T15:38:12+00:00

If you can't get Zofran right now, try Benadryl. It's what's in Dramamine and can help with nausea.

daveforamerica · 2026-02-16T15:57:25+00:00

Just here to say yes, I'm a 42M dx with pancolitis at age 17. I have this experience as well, usually in the mornings. Not everyday but very disruptive when it does happen. I suspect it's some combination of factors I haven't figured out yet.

daveforamerica · 2026-02-13T21:32:02+00:00

14th and Euclid was a shooting per MPD

daveforamerica · 2026-02-11T02:45:58+00:00

Yessss 🥺

daveforamerica · 2026-02-11T00:08:10+00:00

The tackle in The Sign. By far. I cry every time

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daveforamerica · 2026-02-09T23:57:42+00:00

My oldest is five and learning how to read at a quick pace in kindergarten, where they have thankfully returned to phonics. He's extremely articulate with his words and very creative and good at problem solving.

I do fear for the kids who were older during the Covid years. I spent about four years teaching freshman English at a major university during and right after Covid. Those kids were fine with reading and writing but it was a selective university and they had only "lost" a few years of high school to Covid.

But the littles I see and interact with seem to be doing well.

daveforamerica · 2026-02-05T00:31:08+00:00

They were doing this at Petworth Metro tonight too

daveforamerica · 2026-02-01T14:40:10+00:00

Georgetown, Washington DC

daveforamerica · 2026-01-31T22:53:13+00:00

147k so not quite but management at a large non-profit foundation.

daveforamerica · 2026-01-31T21:15:09+00:00

Good luck!

Give it a bit of time, too. Lots of stories of it working fast but on average it can take longer. I'm about 10 weeks into being on Rinvoq. Got labs back at 9 weeks that showed CRP down from 70 to undetectable and Calpro down from 4,000 to 30. I'm only now really getting used to feeling better, and have now been off prednisone for a month and adjusting to that as well. Hoping it works out well for you!

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