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2 months on Xeljanz

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Ulcerative Colitis
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Posted 6/2/2019 4:59 PM (GMT 0)
I've been on Xeljanz (10mg, twice a day) for 2 months now while also tapering on prednisone. I'm now down to 5mg of prednisone daily. My symptoms have improved over the past 2 months, but I'm still experiencing a flare. BMs are 2 - 4 per day, but usually more towards 4 and are still loose to slightly formed. This is a vast improvement from where I was a little over a year ago, but still not where I know I need to be. So, my question is, how long do I wait it out on Xeljanz before determining that it just isn't working well enough? I've tried incorporating in Rowasa enemas, but those seem to cause more irritation than help. I've tried them several times now and each time I do, I experience more bleeding. Not sure if this is coincidental or if I'm allergic. While on an oral form of mesalamine I developed a staph infection several months ago, so just not sure if mesalamine is my jam. Not sure what else to try with Xeljanz or how long to give Xeljanz for full effect. Thoughts / suggestions?
Posted 6/2/2019 5:26 PM (GMT 0)
2-4 a day is pretty good. I guess the real test will be whether you continue to see improvement and get off steroids. Have you had FCP to see how the results look? Can you add something like imuran while things are mild? You could add that and stay steady on prednisone until you feel like you're out of the flare up. Is your blood work looking good? You could also try steroid enemas instead of rowasa, or in addition, every other day - or whatever schedule works for you. Your GI should really be offering options. Have you reached out to express your concerns?
Posted 6/2/2019 7:32 PM (GMT 0)
Hi i agree, you need to be doing calprotectin measurements to track if you're making progress with xeljanz. I thought that xeljanz "might" be working for me by week 5 but i still had doubts and i was actually pretty shocked by week 7 to see my calprotectin had dropped from 1600 to 550 within a month (and even then, I thought the lab had made a mistake because I'd been awake all night with pain on the day of the measurement). I just checked my poop chart and 8 weeks was the cusp between dropping from 5 bms to 4 bms. Even now im officially in remission i still go 2-3 times most days.
The guidelines are you should not take imuran with xeljanz because it's too much immunosuppression.
I would personally avoid adding extra meds at this point otherwise you don't know what's doing what. Xeljanz is strong stuff!
I agree you should discuss things with your gi.

Post Edited (poopydoop) : 6/2/2019 1:49:12 PM (GMT-6)

Posted 6/3/2019 12:12 AM (GMT 0)
Wow! Two months is good and you’re seeing improvement. My husband was told the 15-16 week mark is how long to “give it a go”. One patient she had showed no improvements and then on week 16 just, poof, got better. Xeljanz is a slow drug from what I understand.

He’s just starting week 5, not getting better though, so kinda like you where we are just waiting it out fingers crossed. (He’s been so steroid dependent so this is the first time we’ve really tried a drug without the “help” of prednisone/tapering.)

Hope that helps to answer your question. Fingers crossed for everyone! Running out of options around here 😞
Posted 6/3/2019 3:33 AM (GMT 0)
You’re running out of types of medication. I’d have a scope before I’d stop. Your flare could be near over but your colon is still healing.

Have you tried any ASAs like asacol or others?
Posted 6/3/2019 4:14 PM (GMT 0)
Improvement is improvement, so I would not label it a failure. Waiting another month and doing nothing else could land you into a remission. If not, I would would suggest adding more meds to xeljanz, considering adding back in mesalamine or consider adding in thiopurines (azathiopurine/imuran, 6mp).
Posted 6/3/2019 5:45 PM (GMT 0)
You can't take thiopurines with xeljanz
Posted 6/3/2019 7:03 PM (GMT 0)
Thank you for the suggestions, advice and support. It's good to know others have seen results with more time on the medication. My GI is not helpful at all. He has just said it's probably time to revisit surgery as an option. I agree that may eventually be in my cards, but he tends to give up more quickly on meds than other doctors (from what I've gathered on this site). He pulled me off of Entyvio after a year without checking for antibodies and without trying to seem if more frequent infusions helped. I don't really trust him anymore and have an appointment with another local GI set up in August (the soonest I could get in as a new patient). My current GI doesn't check FCP levels either. He uses c-reactive protein as a measure of inflammation. My latest c-reactive protein test was a little over a week ago and that was a 3. My other blood labs are fairly good. My white blood cell count is a bit elevated. I did see a naturopath right before starting Xeljanz. He ordered a FCP and that came back with a 701 (before Xeljanz). I will ask my GI to order a FCP and see where I'm at now.... Maybe at my request, he will do it. Through the naturopath it was a pricy test and not covered by insurance. That will at least give me a better idea if I'm actually improving / healing internally. I am a bit afraid to try 5ASA's again after my most recent experiences with more bleeding and staph, but it could also just be coincidental. I'm not sure if many people are actually allergic to 5ASA's. Thanks again for the feedback! I greatly appreciate it!
Posted 6/3/2019 7:40 PM (GMT 0)
A lot of people respond within days to xeljanz- my gi was convinced I was going for surgery when I hadn't responded at 4 weeks and was really surprised that it worked for me eventually. It's such a new drug, the doctors are still learning...
Also people on this forum told me that the odds of responding to xeljanz would be very small as I hadn't responded to other drugs.
I think another calpro would be very helpful if you can get it. CRP is not a good proxy for colitis - I've had severe inflammation with a crp of 3 (it's gone down to 0.7 since starting xeljanz). If your gi isn't doing calprotectin i would argue he may be pretty out of touch.....it's been around for a few years now and can be very informative.
I disagree with the others about adding new drugs. If you're improving then wait and see how far you can get with xeljanz before thinking about adding other things. I still see improvements at week 20.
Posted 6/5/2019 7:00 PM (GMT 0)
I guess I was one of the lucky ones as I showed an amazing improvement after day 3 and have never looked back other than when we tried to reduce my Xeljanz which did not work for me so back upto 10 mg/twice day.
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