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Stopping mesalamine on Xeljanz?

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Ulcerative Colitis
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Posted 3/20/2023 1:24 AM (GMT 0)
I use to stop lialda after a flare went into remission. Only to flare again. Now i just take 2 lialda a day as a maintenance.
Posted 3/20/2023 10:03 PM (GMT 0)

Sara14 said...
Could be. How are you now? Have you tried restarting the Pentasa? I'm still ok so far. Still on 6 a day.

Slight left side pain, wind & soft bms (1-2) still.
I've restarted Pentasa, orally & suppositories though I feel any inflammation is higher up & out of reach of the suppositories.
Posted 3/21/2023 3:51 AM (GMT 0)
Are you still on the granules?
Ask the GI for the enemas.

q
Posted 3/30/2023 3:27 PM (GMT 0)
I am not feeling the greatest today and had a few other days in the past week where things felt off as well so I'm going back on my mesalamine. I had tapered very slowly down to 4 a day starting this week, which is probably not even enough to do anything anyway (and I missed a few days entirely). I tried to get off mesalamine about a year ago (both times my GI told me to) and I had some mild symptoms then too. But it's hard to know for sure if it's from the mesalamine or not, but I'm terrified of flaring or things getting bad again. I just had a BM and all of a sudden had fairly bad rectal pain and got nauseous. There were a few days earlier this week where I was more on the constipated sign and I've also been having really foul smelling gas. I feel like I have really mild gut pain or churning going on too. I sound paranoid but after so many years of flares, I feel pretty in tune to when things don't feel right with my body.
Posted 3/30/2023 3:32 PM (GMT 0)
I don't think it's paranoid. Better to get on it right away even if it is a false alarm. I waited too long and am still have this flare dragging along. Whenever I feel it is clearing up, back it comes.

My GI seems to want me to stay on mesalamine indefinitely (I mean, even when I was in remission). Mind you she also wants me on steroids which I am trying to stay off if at all possible.
Posted 3/30/2023 3:39 PM (GMT 0)
Thanks. Yeah, I've been on mesalamine ever since diagnosis in 2007. I guess since I've been doing well on a stronger med (Xeljanz) now for quite a while, he thought I could go off it. I don't know if I should go back to the max dose now or what. It's hard to know because I've been tapering down so slowly, like, for months, and before that, I was missing a lot of doses and was always fine. But yeah, I definitely don't feel quite right. The pain and nausea passed after I had a BM at least.

Sorry you're still flaring. I forget--had you lowered your mesalamine before the flare started? I wonder how long it usually takes people to flare after they stop mesalamine or lower their dose.
Posted 3/30/2023 4:21 PM (GMT 0)
No I hadn't lowered my dose. Makes me wonder if it is actually making any difference if I flared on it anyway... but I dutifully continue to take it. Maybe it would be worse without it. Who knows.
Posted 3/30/2023 4:35 PM (GMT 0)
Yeah. That was my experience in the past, too.
Posted 3/30/2023 6:01 PM (GMT 0)
Fairly bad rectal pain with orevious constipation...could be inflammation. Oral mesalamine won't deal with that, however, if it does continue, start the enemas.

I think it's a good plan to stay on the oral regardless. Maybe maintenance of 2400mg is all you'll need. What are you at now?

q
Posted 3/30/2023 6:09 PM (GMT 0)
Left side pain and tenesmus have gone. Still 1-2 bms a day & consistency not 100%, better than what it was but definitely not where it should be. Hoping I am slowly healing.
Posted 3/30/2023 9:25 PM (GMT 0)
Ms: Glad you are improving.

quincy: Thanks. The enemas I have at home are probably 3 years old. I should probably toss them and get some more to keep on hand. I really don't want to go back on enemas unless I need to. I'm still not completely sure this is even a flare or what's up. I did also miss a couple doses of Xeljanz this week and I seem pretty sensitive to missing any of those pills, so it's hard to say. I had been off the mesalamine entirely for a few days, then went back up to my full dose this morning because I was freaked out (4800 mg). I did send my GI a note but he is out of the country and has not gotten back to me yet. I may be worried about nothing but I don't know. I'm feeling super tired as well.
Posted 3/30/2023 10:34 PM (GMT 0)
What's the date on the enemas?
Dont wait too long...easy treatment . Let us know how your butt fares 😕
q
Posted 3/30/2023 11:41 PM (GMT 0)
I'll have to look. They're also still sitting in my back closet where I had a bit of a mice infestation this summer...lol. So yeah, I know they're sealed but it still kind of grosses me out. I know they are at least 2 years old.

Will do, thanks. GI got back to me already and he suggested I just go back on the last dose of oral mesalamine where I felt stable. I asked him how long it generally takes before people flare when going off mesalamie if they're going to, but he didn't answer that. He's so quick at getting back to me though, it's quite impressive.
Posted 3/31/2023 9:13 PM (GMT 0)
Today I feel totally normal other than I only have a very small BM this morning so maybe some constipation going on. Maybe it was just a weird blip. I think I'll still stay on my mesalamine though.
Posted 4/1/2023 3:07 PM (GMT 0)
I still get little blips here and there but they usually don’t lead to anything.

I think it’s wise to be very proactive. And it’s probably a smart move to stay on mesalamine. You also said you missed a couple of xeljanz doses and it could have been that. I had to postpone my infusion for 10 days and I felt it. I don’t think my dr believed me though. He wanted to blame it on all the medication I was on. Who knows right?

You might want to try cutting out the mesalamine in another year. But then again, if it ain’t broke why fix it?
Posted 4/3/2023 4:04 PM (GMT 0)
Yeah, I think I'm fine. I just get worried if I have an off day or two. It definitely could've been the Xeljanz doses I missed. I refilled my little weekly pill container so I'll be better about not missing any again. I've missed mesalamine doses left and right for the last year and nothing ever happened, but maybe I'll just stay on a lower dose of it for now and see what happens. I would prefer not to take 12 pills of Delzicol anymore, just because it's annoying.

That's good to hear you can get little blips and they don't usually lead to anything. Thank you!
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