u/browntown994

So, this isn’t a question of “should I go on Rinvoq or not?”… nope, it’s happening and I’ve come to terms with it. Failed Remicade (gave me drug induced lupus), then Entyvio, Stelara, and Skyrizi just never fully solved the problem.

I received some great reassurance from a fellow IBD’er, thanks Kris. Also very active in this sub.

Anyway. I ordered a health tracker band to wear, so it can notify me of heart rate, AFib, etc.

What has helped you in regards to acne, weight, and any other common side effects? I don’t want to overthink or over prepare, but I also don’t want to let things go to the point where I wished I had paid attention a lot earlier.

Keep fighting the good fight, everyone. UC sucks so much. Everyone has their own problems, but this one we deal with is a bit shittier than others..

I know a lot of people in our UC community struggle with gaining weight. But, my problem is the other way around. My gut feels tight and bloated, all the time. I’m coming off yet another prednisone taper and the weight retention always happens. Now, because I have UC, Lupus, etc.. it’s hard to just start grinding out workouts. I may get on a 2-4 day flow, but then fatigue and weakness hits. Disrupts everything.

Anyone have advice or experience anything similar?

Tried Remicade, gave me drug induced lupus. Entyvio worked but even after going to every 6 weeks, it never did the trick. Stelara worked for 2 years but slowly stopped working. Currently on Skyrizi OBI’s .. they work but I just had a flare and I’m coming back down with prednisone and suppositories.

Without going to JAK inhibitors yet, has anyone had success on the 4th, 5th, 6th biologic attempt? I’m not even sure what’s left for me in that realm. Tremfya maybe

13 years of UC, and various remissions but none of the biologics really lasted. Remicade, Entyvio, Stelara, and now Skyrizi. My next (6th) dose of Skyrizi is next month which is the 3rd total OBI.

Remicade gave me drug induced lupus unfortunately. I was on Stelara the longest but barely hanging on. Not even sure I was ever in full remission.

Currently on a 40mg prednisone taper because the Proctitis flare right now is just awful. My gut feels fine but the rectal pain and urgency is 9/10, must find restroom in 30 seconds.

What was your journey at the 4th or 5th biologic failure? I’m nervous about Rinvoq’s cardiovascular implications. But I’m also worried about my gut and colon health long term on these damn steroids along with consistent bleeding/scarring

I’m on Skyrizi with the infusions done, and completed two OBI’s so far. No stomach pains anymore, strength has returned, however.. the proctitis is persistent. It’s awful. Currently on a rotation morning/night of hydrocortisone enema and mesalamine suppository. Holding well for now but it’s not yet setting a good course to remission. Anyone else experience this?

Blood is basically when wiping at the very end of the BM. Can’t keep gas in. The urgency when pressure hits the very end of the rectum … 9/10.

3rd OBI in June, then colonoscopy end of July. Until then, hoping this works because I really do like Skyrizi.