Starting Xeljanz

Sara14 said...
Let us know how your upcoming appointment goes!

Hi Sarah.

I think I remember you saying you took generic Uceris 9 mg extended release tablet daily …at the same time you were also taking 10 mg morning and night of Xeljanz daily…Is that right?

I just looked online under drug interactions with Xeljanz …and Uceris is list as “major”.
Which I think means a lot of people have reported bad side effects.

Yikes.

Your thoughts?

(I also wish there was a private way to message you. I’d happily give you my cell phone number here in South Carolina. It would be wonderful to have a UC “buddy” to soundboard with from time to time. Maybe Facebook? You can find me there. Chris Franco, Florence, South Carolina. USA.)

Post Edited (Rusty Barr) : 9/2/2021 7:26:28 AM (GMT-6)

poopydoop said...
The interaction between xeljanz and uceris/entocort is as follows:

Budesonide may increase the immunosuppressive activities of Tofacitinib

Thanks!

Well. That would be a good thing. Right?

Sarah. Hoping you’ll reply to my last question above.

Hi Rusty! Sorry for my delayed response. You can take both at the same time with no issues. I did. Many of us take prednisone at the same time as any biologic, so it would be similar to that. And yes, the extra immunosuppression is a good thing in this case, like you said. Feel free to email me anytime. If you click on my user name, my email is listed in my profile. There are too many Chris Francos on Facebook, and I couldn't find you.

Ok. Thanks. Email sent.

Sorry I haven't responded to your email yet. Don't taper up the Uceris. You can taper off it if you want to but you don't have to for safety reasons. For the taper off, they sometimes have you do 2 days on, 1 day off for 2 weeks, then every other day for 2 weeks, then off. Or just every other day for a couple weeks and then off. But a lot of GIs don't have you taper off Uceris at all.

I was actually on prednisone when I first started Xeljanz because the covid vaccine made me flare. I was on Uceris before that as maintenance because I couldn't get off without flaring, so my situation isn't really normal. Then after the prednisone, I still wasn't in remission so my GI put me back on Uceris for a little bit. I can't remember how long. I think it was just 2 or 3 weeks and then I just dealt with mild symptoms. This is all kind of unusual though (what I did). I believe usually people take a course of Uceris for 6-8 weeks. Did your doctor advise you how long to take it?

I'm also still on max dose of Delzicol and I still do Rowasa enemas. I've decreased the enemas to 1-2 times a week though, down from nightly. I'm not sure if the mesalamine is even doing anything for me anymore, or doing much. I'm still on the higher dose of Xeljanz. It's been almost 12 weeks now and I've been off steroids for almost 8 weeks now. I get more labwork next week. I feel like I'm in remission but my labwork at 9 weeks still showed inflammation which is weird so we're re-doing it. I just hope it doesn't stop working. Remicade worked for me but only for 9 weeks.

I'm really sorry you are still struggling.

Prednisone is terrible for you long-term. I wish I hadn't jumped to taking it so many times. Uceris is unlikely to help a bad flare. I'm sure that's where the lower ratings came from, for the most part. I'd say a week is pretty quick to work. Look how long all these biologics take.

I see in some old threads. Several have reported Uceris kicking in, in a big way on day 5.
That would be wonderful. Flaring is awful.

It’s the morning of day 7 on Uceris 9 mg ER tablet.
I think things are improving but I’m not there yet.

This morning, I still have lower abdominal cramping. It comes on, maybe once an hour or so, lasts about two or three minutes, and if I ignore it, it goes away.

Sometimes, when this cramping occurs, I go to the toilet, and nothing comes out but a few small brown and red pieces in the bottom of the toilet bowl. When I wipe there is a small mix of brown and bright red on the toilet paper and some light mucus.

Sigh

Good luck Rusty and Sara14. I started my Stelara journey today - had the first IV infusion today. Fingers crossed!

Well, it’s day 8 of the single morning dose Uceris (generic) 9 mg ER tablet.
Pretty much not working. Taking this with Xeljanz 10/10.
Still miserable. The worst is the middle of the night. I’m averaging 4 crampy wake ups, every hour or two, then a tender walk to the toilet, then a little D with a lot of cramping, No blood on the D. But bright red blood on the TP at the end and some mucus. Also down in the bowl at the end, small tiny pieces of brown mixed with tiny pieces of bright red. No fun.

Texted my GI. He said “ok. That’s enough. No more Uceris. Cold turkey. Tomorrow morning start 10 mg of prednisone and the another 10 mg in the afternoon. Let’s see how you do with that. We can increase it if we need to”

I’m actually looking FORWARD to the prednisone. The last week has been awful. Prednisone always works almost immediately for me. I can feel things changing the same day. Usually within three or four days I am in remission. Although I usually start out with 30 mg or 40 mg. I’m guessing he is starting me out lower dose because of the Xeljanz and the coming immediately off the Uceris?

The typical downside for me is that I’m up until the wee hours of the morning when taking prednisone. It doesn’t make me jittery but it makes me feel like I have had two cups of coffee before bed. Sigh.

UCyousee said...
Good luck Rusty and Sara14. I started my Stelara journey today - had the first IV infusion today. Fingers crossed!

Thanks! Feeling well over here. My CRP is now normal again. Waiting for calprotectin results before we try to lower my Xeljanz dose. Good luck to you as well!