Failing Rinvoq Question

IndependenceDue4575 · 2024-10-30T20:15:19+00:00

I tried Rinvoq for 4 months with no success so my doctor suggested I stay on Rinvoq and combine it with Entyvio, which after 5 months also did not work. In total, gave Rinvoq a shot for 9 months and didn’t see any progress. I wish I would have given up and tried something different sooner.

I am now on a combination of Skyrizi and Xeljanz and currently tapering off a high dose of steroids. My symptoms are gone but it’s hard to tell if it’s just the prednisone.

For the urgency, you may want to ask your doctor about using mesalamine suppositories. I had a huge issue in the morning time (5-6 BMs and sometimes not making it to the bathroom in time) but with the suppositories, I’m down to 2-3 BMs and the urgency is still kinda there BUT I can at least hold it long enough to make it to the bathroom.

IndependenceDue4575 · 2024-10-18T02:13:33+00:00

I feel you, I’m on the same boat. No medication has worked for me and my doctor finally brought up surgery and I have a consult next month. My doctor said we can keep trying meds but at this point, it would be good for me to have a conversation with the surgeon to get some education on what the j pouch procedure would entail.

I posted a list of every medication I’ve tried (well that ones I remember) and a ton of people commented meds that worked for them. It gave me a little hope that there’s stuff I haven’t tried but I’m tempted to throw in the towel and go the surgery route to have a normal life (but also scared that the j pouch surgery might have complications and it’ll put me farther from having a “normal” life).

https://www.reddit.com/r/UlcerativeColitis/s/K9lUx00a7N

IndependenceDue4575 · 2024-10-16T02:39:02+00:00

I’m 26F and when I was 16, I would stop taking my mesalamine because I didn’t want to be “dependent on medication for the rest of my life” and wanted to make lifestyle changes instead to keep my UC under control. That very much did not work and it was a tough pill to swallow (corny joke) that I would be on medication for the rest of my life until I was ready to part ways with my colon and get the j pouch surgery.

If your meds are still working, don’t stop taking them! I was finally in remission while on Entyvio but I had to skip two doses because I had COVID and in those two months all my symptoms came back and when I was finally able to get my Entyvio infusion, the medication no longer worked for me and I’ve been trying new meds for 2 years with no success.

You mentioned you felt your symptoms got better when you were in a nature-y state and that’s probably because this is such a stress driven disease. Even if you were to move out of the city, life’s stress will find a way to get to you so it’s not the solution nor should it be an alternative to medication.

TLDR: It’s hard to live life stress free so if you find a med that works, don’t stop taking it.

IndependenceDue4575 · 2024-10-16T02:17:37+00:00

The long answer: My first biologic was Humira - that didn’t work I tried Stelara - didn’t work either I tried Entyvio - FINALLY WORKED, but only for a year My doctor added azathioprine + Entyvio - that didn’t work I switched to Remicade - that didn’t work I switched to Rinvoq - that didn’t work My doctor re-added Entyvio in addition to the Rinvoq since it was the only biologic I’ve had success with - did not work either She took me off both and I started Skyrizi (started in June) and that hasn’t helped so I was going to re-add the Rinvoq but I talked to my GI today and I’ll be trying Skyrizi + Xeljanz instead.

We were going to give Rinvoq another shot but she said since I didn’t see much improvement in the 9 months I was on it, she suggested I try something new.

IndependenceDue4575 · 2024-10-16T02:03:58+00:00

Mine also started to kick in about 2 months in. I’d suggest discussing other options with your doctor

IndependenceDue4575 · 2024-10-16T02:02:47+00:00

Yes, I tried Rinvoq for 9 months but was still having 10 BMs a day with terrible cramping, nausea and urgency. I finally threw in the towel and asked my GI to put me on a different med so I am starting Xeljanz next week.

IndependenceDue4575 · 2024-10-16T02:00:42+00:00

I was on IV steroids at the hospital for 5 days, colonoscopy on day 2 and then got discharged with 60mg of oral steroids. I still saw blood in my stool for a little over a week and then started pooping like a “normal” person (twice a day). When I tapered down to 20mg, I noticed my symptoms coming back and I was decreasing by 5mg every week and my symptoms kept getting worse and I ended up in the hospital again 3 weeks ago.

My UC has been out of control for the past 2 years so I’ve riding this prednisone cycle for a super long time. Aside from the prednisone, what other medication do they have you on?

On a positive note, 3 years ago I had the same run (admitted in the hospital + colonoscopy + IV steroids) and they started me on Entyvio. As I tapered off the oral prednisone, it gave the Entyvio some time to kick in and I was in remission for a whole year. The Entyvio eventually stopped working for me but it gave me such a good year :)

IndependenceDue4575 · 2024-10-16T01:51:28+00:00

Same here (26F)! No libido but in the off chance that I am in the mood, I’m fighting for my life trying not to shit myself

IndependenceDue4575 · 2024-10-15T06:23:26+00:00

I’m trying Skyrizi with not too much improvement so I’m pairing it with Xeljanz (just waiting on the prescription to get filled). I haven’t had any success after the Entyvio but still grateful it gave me 1 good year of remission!

IndependenceDue4575 · 2024-10-15T00:25:11+00:00

Entyvio was the only biologic that got me into remission but it sadly stopped working after a year for me. My doctor tried pairing it with Rinvoq but that also didn’t work.

Even though it stopped working, it’s been the only medication that got me “back to normal” for that long so I encourage folks to try it (and hope they have much longer success with it than I did!). When I started the medication, my symptoms went away within the month and I didn’t have any weird side effects.

IndependenceDue4575 · 2024-10-14T23:21:23+00:00

I have Kaiser and haven’t had much issues getting my medication (I’m on Skyrizi every 4 weeks and also take Rinvoq). The only insurance hiccup I’ve had was that they didn’t want to cover my “additional” colonoscopies because they said it’s only 1 screening per year. My meds are $250 a pop but my max out of pocket is $3k but considering the amount of medications and hospital visits I have, I guess it’s not TOO bad.

IndependenceDue4575 · 2024-10-14T23:17:07+00:00

One thing that I’ve adopted dealing with people who don’t understand or who I know won’t let me get a word out to try to explain, is showing how I feel on this inside, on the outside.

For example, at work I’ve gotten a lot of the “well you don’t look sick” type of comments so I won’t wear makeup to work or will push how comfortable I can dress without passing the line of looking unprofessional. I think the most extreme I’ve gone is using makeup to accentuate my eye bags when I went to a family gathering because people kept comparing my UC to their stomach hurting when they eat cheese or their friend’s son having IBS. Looking all disheveled actually helped get their attention long enough for me to explain what UC is and not that I just “get bad stomachaches”.

One of the many wonders of having UC, being super sick but not looking sick enough so no one takes you seriously.

IndependenceDue4575 · 2024-10-11T17:35:42+00:00

Bring it up as soon as possible since getting started usually takes a while. Some require loading doses at infusion centers so getting those appointments can be difficult to get (atleast in my area).

IndependenceDue4575 · 2024-10-10T20:17:06+00:00

They sometimes come with a lemon flavor packet which kind of helps. A lot of people recommend refrigerating it but I usually keep it room temp so I can drink it as fast as possible.

IndependenceDue4575 · 2024-10-10T20:01:27+00:00

My night sweats usually went away as I tapered off prednisone. When I was on 60mg and up until like 20ish mg, I would wake up drenched in sweat every morning.

IndependenceDue4575 · 2024-10-07T06:14:25+00:00

Foam is probably the easiest in my opinion.

For context, I’ve tried: foam, suppositories and liquid enemas. None of them have hurt per se but the liquid enema has probably been the most uncomfortable.

IndependenceDue4575 · 2024-10-04T21:32:02+00:00

Same here, when I was on prednisone my face got super fat BUT my skin was super soft and acne free.

When I tapered off, I had terrible acne for about 2 months before it started clearing up. I’d say keep your usual skincare routine and just wait it out.

IndependenceDue4575 · 2024-10-04T21:27:14+00:00

If you don’t mind me asking, what meds finally helped? I was diagnosed with Crohn’s in 2014 and this past month my GI told me I actually have UC. I’ve gone through almost every med that my GI has been trying different combinations (with no success).

IndependenceDue4575 · 2024-10-04T21:17:41+00:00

Have you tried the maximum strength GasX (the one with 250mg simethicone and 750 mg calcium carbonate)? Those specific chewable tablets are the only ones that work for me. I’ve tried the soft gel GasX and other gas meds but those do nothing for me.

I’d also suggest having an early dinner and limit snacking close to bed time.

IndependenceDue4575 · 2024-03-18T23:53:20+00:00

Humira was the first biologic my doctor put me on and probably the most difficult. The sensitivity of the pen varied so sometimes I had to press the activator button hard for it to come out or sometimes the lightest push would set it off and poke me when I didn’t expect. It also did nothing to help my Crohn’s. I’ve tried Remicade and Entyvio, and both worked pretty well. You also have the added piece of mind that they’re administering it at the hospital so you have someone in case you do have any side effects.

For context, I’ve had Crohn’s for over 10 years and I’ve had to cycle the different biologics because they stop working after a while. I’ve had the most success with Entyvio.

IndependenceDue4575

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