Stopping mesalamine on Xeljanz?

Did you decrease or stop mesalamine while in a solid remission on another med, such as a biologic or Xeljanz? I've been in remission since around mid-August. I already stopped using the enemas months ago, which I had been needing to use nightly for years, and I miss quite a few doses of my oral Delzicol lately, and never notice a difference. I'm still prescribed the highest dose.

I have a Zoom checkup appointment with my GI in about 10 days and will ask his thoughts but wondered what you all did. I've been on the highest dose of oral mesalamine for 14 years now and am a bit scared to stop it but also it would be nice if it's unnecessary. Maybe my GI will tell me to just decrease the dose. My boyfriend's GI had him stop mesalamine as soon as he was in remission on Xeljanz shortly after he was diagnosed but I always found that odd!

Thanks! I wanted to email you and ask but I got a new email address and forgot yours so I'm glad you replied here. That's crazy they had you stop the first day of infliximab. I've been scared to even decrease mine all these years, but I kind of want to now. I don't know. We'll see, ha.

P.S. I love Xeljanz.

P.P.S. I'm 10 days post my covid booster and am fine. Thank god.

Thank you, Flowers!

Hi Faith! Really sorry to hear you still aren't feeling great. For me, it took 9 weeks to get to a full symptomatic remission (no symptoms, felt normal), but for a lot of people, it works within 3 days to 2 weeks. It helped me before 9 weeks, but I was on steroids the first month or so, so it's hard to say exactly when it started helping. Then I had mild symptoms for several weeks, until one day, I realized I felt normal. I couldn't believe it because none of the biologics worked for me. If you try it, let us know.

Faith: I can't remember, sorry. I think it was 3ish months, maybe 4. I couldn't ever get off steroids the whole time.

That's good to know. Thanks for sharing!

Sara14 said...
Thanks! I wanted to email you and ask but I got a new email address and forgot yours so I'm glad you replied here. That's crazy they had you stop the first day of infliximab. I've been scared to even decrease mine all these years, but I kind of want to now. I don't know. We'll see, ha.

P.S. I love Xeljanz.

P.P.S. I'm 10 days post my covid booster and am fine. Thank god.

I did reply to your last email but it bounced 🤣 So one other reason why I haven't stopped is because when I dropped from 10mg to 5mg xeljanz I started to flare after 3 months, and it was adding mesalazine enemas that put me back in remission. I just don't trust my body to handle 5mg alone without flaring.

I love xeljanz too. Just had my 3 year anniversary. Would have been in surgery without it (that still might come in the future of course).

Happy things stayed quiet after your pfizer booster!

A year later and I'm finally tapering off my mesalamine. I'm down from 12 pills a day to 8 a day currently. Going down to 6 a day this week. I'd been missing a lot of doses of it the past few months anyway with no symptoms returning. So far, ao good, but still a bit nervous since I've been on mesalamine since 2007, at the highest dose almost that entire time.

Thanks! It would be nice to take way fewer pills each day! Even just not taking 12 of those is nice.

With the mega flare I stopped cold turkey. Inexperienced GI . That was when I was on infliximab not xeljanz.

With xeljanz I've tried to wean off a couple of times but symptom creep back and calprotectin goes up.

I've been down to 6 a day now for a week. Still feel fine. Going to stay at 6 for a at least another week though. Just mentally worried because 6 seems so low after being on 12 since 2007!

Thanks. Yeah, my doctor said I could taper off pretty quickly, like 1 or 2 pills a week (can't remember). I don't even know if tapering would matter at all for mesalamine or what the point would be other than to catch possible symptoms returning sooner maybe?

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