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Xeljanz - long term?

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Ulcerative Colitis
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Posted 7/24/2018 8:50 PM (GMT 0)
Hi there - I have exhausted mesalomine, Imuran, Remicade and most recently developed an allergic reaction to Humira, all within 2 years. My next options are Entyvio or Xeljanz. I like the idea of taking Xeljanz conveniently on my own. I would like to find a drug that works for the long term. Also, I gained alot of weight on Humira - although I'm glad to be feeling better, I would like a drug that doesn't pack the pounds on!

Thanks in advance for any help in this process -
Posted 7/24/2018 8:52 PM (GMT 0)
We've had success stories with both Entyvio and with Xeljanz, both seem like solid choices. Both are fairly new and therefore there is not a long term history report for most. The best we have is some who we able to get those meds early on during clinical trials and off-label, before the official approval of those meds for the treatment of UC (which was fairly recent). Suzyq has had great luck with Xeljanz and got on it early on. There's several entyvio successes but I cannot remember the usernames off of the top of my head.

They're both meant for longterm, maintenance treatment of UC. Given, we can get antibodies to anything and loose response eventually. No guarantees or promises of forever, but rather a hope of forever. You can hedge your bets and start imuran/azathioprine/6mp concurrently to reduce the odds of antibody formation if you are prone to it.

As always, our insurance often determines which medications we can try in what order. So see if you truly have a choice between them, or if insurance mandates one before the other. As that might simplify your choice.
Posted 7/24/2018 9:19 PM (GMT 0)
Hope it works for you. Is it a shot or a pill?
Posted 7/24/2018 10:51 PM (GMT 0)
My doctor told me that you don't develop antibodies to Xeljanz so I assumed it was meant for the long term. Is this not true?
Posted 7/25/2018 12:11 AM (GMT 0)
Sara - it's a pill, taken twice daily (UC patients are not eligible for the extended release version of Xeljanz, I would guess because of the risk of GI bleeding/perforation).

Countess - You cannot develop antibodies to Xeljanz, which is great news. See: https://consumer.healthday.com/gastrointestinal-information-15/inflammatory-bowel-disease-news-78/arthritis-drug-shows-promise-for-ulcerative-colitis-722330.html

I met with my GI last week, who is at a large hospital with a sizable IBD center. He is an IBD specialist. We had pretty much this exact conversation, as I too have failed a few medications including Remicade.

He said they are actively prescribing Xeljanz and seeing good results thus far.

Their safety experiences with Xeljanz are good so far, but they have more safety data on Entyvio in UC patients specifically.

He gave me the choice, but recommended that Entyvio should be my next step, followed possibly by off-label Stelara (which they are having good results with for their UC patients), with Xeljanz used as a salvage therapy when the next option is surgery.

I think it's amazing to have the choice of an oral medication, especially when compared to the hassle of getting Remicade for two hours every 4 weeks. But 30 minutes every 8 weeks (hopefully!) for Entyvio would be an improvement, too.

Good luck! I think you can't go wrong with either one.
Posted 7/25/2018 8:03 PM (GMT 0)
My husband has now been on Xeljanz for over two years and is in remission. For him it has been the miracle drug. No apparent side effects. He says he could tell in the first few weeks that it was working. Now that it has been approved by FDA it may be easier to get insurance approval.
Posted 7/25/2018 9:27 PM (GMT 0)
I, too, have exhausted nearly all of my non-surgical options at this point. Just got Xeljanz authorized and starting this week. I'm not going in with high expectations given my history of non-response to biologics, but hopeful nonetheless smile.
Posted 7/26/2018 1:01 AM (GMT 0)
Hayden -- my husband was in the same boat as you and 10 days from surgery. The good thing about Xeljanz is you should know within weeks whether you are responding at all. Best of luck.
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