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Xeljanz Stopped Workinf?

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Ulcerative Colitis
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Posted 4/30/2022 1:54 PM (GMT 0)
Hi - has anyone had their Xeljanz just stop working? I’ve been on it since October of 2018 and and have enjoyed no flares all this time….then all of a sudden this April I’ve started flaring. It’s been most of this month. I started 40mg of prednisone on Thursday, but it’s not working yet. I was doing cortenemas too, but was having so much trouble keeping them in. Has this happened to anyone else on Xeljanz?
Posted 4/30/2022 7:28 PM (GMT 0)
I've seen people mention increasing the dose. I wonder if that's an option for you? Good luck with the pred. I am sure you will get back to good health with some time and patience.
Posted 4/30/2022 7:41 PM (GMT 0)
I'm sorry to hear about this. What dose are you on? How many mgs?
Posted 4/30/2022 8:30 PM (GMT 0)
Yes. I was perfect for 18 months with xeljanz and then it stopped working.
You can increase the dose but it didn’t help me.
Posted 5/2/2022 11:52 AM (GMT 0)
Are you on the 5 mg or 10 mg pills? I've had a few temporary "blips" here and there on Xeljanz but upping my dose temporarily got me back to normal within days. I then went back down with no issue.
That really sucks it stopped working for you after 3.5 years.
Posted 5/2/2022 12:24 PM (GMT 0)
If they lowered your dose, there is a slightly better than 50% chance of regaining remission if they raise the dose up again. See this video by Dr. David Rubin on JAK inhibitors: 'JAK Therapies: Mechanism of Action, Pharmacotherapeutic Profiles, and Positioning' on YouTube.
Posted 5/2/2022 1:38 PM (GMT 0)
Thanks for your replies, everyone. I'm currently on the 5mg/2x a day of Xeljanz. I mentioned going up to my GI and he wanted to just go on prednisone, as he thought it would be a quicker recovery. I've been on 40mg for 5 days, plus enemas at night, and I haven't gotten much relief. I may ask about using the Xeljanz, but of course the 10mg/2x a day dose scares me with the blood clot warnings.
Posted 5/2/2022 2:20 PM (GMT 0)
There's a blood clot risk with the lower dose too. I'd be more scared about being on prednisone myself. I just upped mine on my own. They send me the refills so early that I always have an entire extra bottle of the 5 mgs. Hope you start feeling better soon.
Posted 5/2/2022 3:22 PM (GMT 0)
I would chose upping xeljanz over 40mg prednisone any day... and I have a risk factor for blood clots (on birth control).
But I also have osteoporosis from prednisone so I will chose surgery over steroid dependence.
Posted 5/2/2022 8:55 PM (GMT 0)
Agree with the comments above. Prednisone is very toxic. Have your doctor up the Xeljanz.
Posted 5/4/2022 1:24 PM (GMT 0)
I always have the extra bottles too - so I may just up the dose like y’all said. I really hate prednisone as well. I believe when I did the loading dose years ago, along with prednisone, it worked fairly quickly. My GI is trying to get Humira approved for me, but my insurance is so stingy.
Posted 5/4/2022 2:31 PM (GMT 0)
That's odd. Why move to Humira before even trying the higher dose of Xeljanz?
Posted 5/6/2022 11:22 PM (GMT 0)
maybe xeljanz do not stopped to work but your circumstances have changed.
Maybe more stress made worst your uc
Posted 5/9/2022 5:10 PM (GMT 0)
I’m currently upping my dose of Xeljanz. My GI didn’t want me too, but I’m doing it anyway, as I’m hoping it will help like it did before. I’m almost at a week - I believe it took at least two weeks previously, so I’m praying that’s the timeline again. Thank you, everyone, for your input - it’s much appreciated!
Posted 5/9/2022 6:01 PM (GMT 0)
Hopefully this will get you back in remission. We have a member that posts about her husband & Xeljanz. He was in the trials & stayed on it until the FDA approved it. I think he's been on it for about 5 years, any how, he was on the max & when he tried to drop down he went into a flare. Currently, he is still on the max dose & her last post she said the drs may try to reduce him this summer.

Keep us posted.
Posted 5/12/2022 8:26 PM (GMT 0)
Thank you, Susie!
Posted 5/21/2022 2:46 AM (GMT 0)
Did it work?
Posted 5/27/2022 12:33 AM (GMT 0)
Hi! Sorry for my late reply - so after three weeks on double dose of Xeljanz I am finally starting to feel better! My GI is going to switch me to Humira though since the lower dose seemed to stop working? I figure I can always go back to Xeljanz if I need to.
Posted 5/27/2022 1:20 PM (GMT 0)
Your dr should let you continue with the higher dose, just my thoughts. If you are wanting to stay on it, I would tell him this, at least let you give it a decent trial since you are getting better. Now a days we do have to advocate for our healthcare.

Keep us posted.
Posted 5/27/2022 2:27 PM (GMT 0)
I agree with Susie. We have to be our own advocates with this disease. If the higher dose is working why not stay on it? There have been others here who had problems when they dropped the dosage but it works at the higher dose. I have seen some who found their sweet spot to be 15 mg/day -- so halfway between the higher dose and the lower dose. Doesn't make a lot of sense to change meds when it's working. It's so hard to find the right med that works. Also, sometimes meds don't work as well if you stop taking them and try to restart later. No idea if that would be the same with Xeljanz, but if it were me I wouldn't want to chance it.
Posted 5/27/2022 6:33 PM (GMT 0)
Also there is no saying you'd need to stay on the high dose indefinitely- especially since you managed >3 years on the low dose. Maybe a few months is enough to get into a deep remission again.
Posted 5/28/2022 4:13 AM (GMT 0)
Hi poopydoop:

I would recommend you watch this short video by Dr. David Rubin from the University of Chicago. He is one of the leading gastroenterologists in the world, and was very involved in the Xeljanz trials. Around minute 5 he talks about folks who have lowered their Xeljanz dose and then try to up the dosage again if they start to flare. The interesting thing is that only a little above 50% are able to recover the effectiveness of the original high dosage. Here is the video in YouTube: "JAK Therapies: Mechanism of Action, Pharmacotherapeutic Profiles, and Positioning".

I personally think you are taking a big risk by going altogether away from a medication that is working for you. And the medication they are moving you to, Humira, is the least effective in head-to-head trials between Humira, Remicade and Entyvio. The advantage of moving to a anti-TNF alpha is safety. But even then, Stelara is safer. If you are going to move to a biologic, Stelara would be my choice.

All the best.
Posted 5/28/2022 12:20 PM (GMT 0)

tonito said...
. The interesting thing is that only a little above 50% are able to recover the effectiveness of the original high dosage.


I would imagine that's the case with most UC meds. Sometimes a dose escalation works, and sometimes it doesn't.
Posted 5/29/2022 2:05 AM (GMT 0)
Yeah, I agree with the others. I definitely would NOT switch to another medicine. What do you think, PoopyStar?
Posted 6/7/2022 12:03 AM (GMT 0)
I think what everyone is saying makes sense. I guess my GI was so quick to switch me is because he originally wanted me on Humira but my insurance denied it. I think he’s concerned about staying on the higher does of Xeljanz. I’m trying the Humira and hoping it works and if not, hoping I can just go back to Xeljanz. I would prefer Entivyo or Stelara but I know insurance would never approve that right now. I’ve done done some research where they say Xeljanz should only be prescribed if the patient failed a TNF blocker (of course just one opinion). I appreciate everyone’s input - we shall see, praying for a good outcome.
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