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For those on Xeljanz--what do you do if symptoms return?

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Ulcerative Colitis
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Posted 3/21/2022 9:11 PM (GMT 0)
Do you up your Xeljanz if symptoms return, add in mesalamine enemas, or do something else? I'm still fairly new to this drug and wondered what the typical protocol is. I have had some mild symptoms lingering the past few weeks. I wasn't completely sure if they were flare symptoms or not because it was more towards the constipation side, but this weekend it felt like the beginning of a flare for sure. I upped my Xeljanz on my own 3 days ago and feel a lot better today. I also upped my mesalamine back to the max dose and will add enemas back in starting tonight.

I wrote my GI today and he said to only stay on the higher Xeljanz dose for 1 week. That doesn't seem like long. I'm wondering if he believes I was actually flaring though or not because in the past when I've had some little "blips," he has talked about IBS even though I don't believe I have IBS. Thanks.
Posted 3/21/2022 10:47 PM (GMT 0)
I added mesalazine enemas and stayed on the 5mg dose. It worked. I started to flare 3 months after dropping from 10mg to 5mg.
Posted 3/21/2022 11:47 PM (GMT 0)
Thank you.
Posted 3/22/2022 1:19 PM (GMT 0)
Hope you get back into remission!
Posted 3/22/2022 2:01 PM (GMT 0)
Thank you. I'm so confused, don't really know what's going on. I did use an enema last night and retained it all night without much discomfort.
Posted 3/22/2022 5:46 PM (GMT 0)
Sorry to hear that. Hope you feel better soon. I’ve been flaring since early February and we can’t figure it out. I might take a chance on Xeljanz. 🤞
Posted 3/23/2022 2:36 PM (GMT 0)
Thanks, Ryan. I would definitely recommend trying it.

So, yesterday I didn't go to the bathroom at all and felt pretty much normal. This morning, I've gone twice, a little urgency but no real pain. I'm just scared once I go back down to the lower dose, I'll feel crappy again. I'm also dealing with a ton of stress at the moment and haven't been eating as much as I normally do. Lots of things going on so hard to say.
Posted 3/23/2022 6:08 PM (GMT 0)
That’s a good sign tho! Maybe continue enemas for a week or so and try and get stable!
Posted 3/23/2022 7:21 PM (GMT 0)
Will do. Thank you. Today I had 3 BMs so far. No blood or pain really (since this weekend) at least.
Posted 3/23/2022 11:36 PM (GMT 0)
For what it’s worth, when my husband went from 20 to 10 a few years ago and started flaring (at least, he thinks it was a flare) he immediately went back up to 20 and stayed there for another 3 years. about 6 months ago went down to 15. So far, so good. May try going down to 10 again soon. Since relatively so few are using Xeljanz for UC, I suspect doctors are just making this up as they go. Unless your doc has a lot of UC patients on Xeljanz, their guess is as good as yours. After 5 years at 20 mg my husband’s cholesterol was elevated, but it has started to come down at 15 mg.

If you need to go back up to a 20 for awhile, the challenge will be getting insurance to cover it. They will…..
Posted 3/24/2022 2:06 AM (GMT 0)
Thank you, suzy!
Posted 3/30/2022 6:38 PM (GMT 0)
I'm feeling mostly back to normal now, but still not pooping regularly. I haven't gone at all yesterday or today yet. I barely ate yesterday though (was going through some really stressful stuff), so that could be part of it. I'm scared to decrease the Xeljanz, but my GI said only to stay on the higher dose for 1 week...
Posted 3/30/2022 10:28 PM (GMT 0)
Maybe you could ask your doc if you can do what Suzy's hubby did ... go down to 15/day for a while before dropping back to 10.
Posted 3/31/2022 11:23 PM (GMT 0)
Thanks. I went to the bathroom pretty much normally today (still have really narrow stools sometimes, not sure if that's an actual concern or not). Pain is gone. I stayed on 10 mg 2xday for 2 weeks because I had enough extra of the 5 mg tablets to do so. I guess I'll try to go down to the lower dose like my GI suggested this weekend and see what happens. I get freaked out if I have any symptoms appear or if I don't have a BM daily after so many years with UC, but especially if I have any pain.
Posted 6/7/2022 12:22 AM (GMT 0)
How are you doing, Sara? Are you still on the higher dose?
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