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Starting Tofacitinib/Xeljanz soon

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Ulcerative Colitis
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Posted 3/2/2018 3:07 AM (GMT 0)
Today i had a doctor's appointment and he mencioned that basically Remicade is not working for me in the long term, that it only works when I'm taking around 40 mg of prednisone. Because of this, the doctors decided to get me to try Tofacitinib/Xeljanz soon. I have another appointment on the 14th of March and there the doctors are going to discuss this possibility and when will I start, etc.

Anyone here on these meds that would like to share the experience so far? What has been the feedback so far? Is it promising? And does it give me "freedom" (as in travels, internships in foreign countries, etc.)?
Posted 3/2/2018 3:24 PM (GMT 0)
it is a pill, so that is a kind of freedom. I am not sure how available it is at pharmacies outside the country.

it may be a good news bad news situation. if it helps you in particular it will be mostly good news.

You are failing Remicade, and that is bad because modt people who fail remicade do not find another biologic that works. But some do - especially if it not a TNF drug like Remicade.

Tofacitinab helped about 1/3 of the people over a year long trial. The placebo helped about 1/10. IT also has side effects. People were more likely to get serious infections, and to catch herpes zoster. There were also elevated incidents of problems with cardiovascular health.

This is based on about 500 people with UC, and if you looked in arthritis forums/literature you might find better info on side effects based on many more people, because it has been approved for rheumatoid arthritis for some years.

www.nejm.org/doi/full/10.1056/NEJMoa1606910

SO, roughly speaking you got a 1 in 3 chance of managing symptoms and/or remission. You also got some risk of infection.

I hope you are one of the 34% who respond. Good luck,
Posted 3/2/2018 3:46 PM (GMT 0)
You could try Stelara the numbers are better, 57% achieve remission and 86% have seen a "Clinical Benefit" after 12 months.

It's an injection every 8 weeks, so it might be easier on your schedule.

It is VERY expensive and is difficult to get approved. My insurance company is billed $21K a month and pays almost $11k after their contracted discount rate.
Posted 3/2/2018 3:49 PM (GMT 0)
Well, I'm not sure what to think about it. I guess I gotta hope for the best.

If it fails, I still have surgery lol

Thx for the answer!
Posted 3/2/2018 3:53 PM (GMT 0)
I've read about Stelara. It's an interesting one, but I don't know if it is avaiable in my country.
Posted 3/2/2018 5:25 PM (GMT 0)
There's been a few success stories with Xeljanz, most notably user Suzieq whose husband went into a remission when they were on the verge of surgery.

/www.healingwell.com/community/default.aspx?f=38&m=3600816&p=2
Posted 3/2/2018 7:44 PM (GMT 0)
How about Entyvio? It has better safety profile and has been approved specifically for IBD.
Posted 3/2/2018 8:14 PM (GMT 0)
The choice was between either Entyvio or Xeljanz. What they said is that Entyvio takes too long to start kicking in and that the results were not exactly of their liking (and considering my colon gets to a bad state quite quickly, maybe they don't want to risk it). I guess that if I fail Tofacitinib I will try Entyvio?

I don't know, I just want to have my colitis controlled and eat ahah
Posted 3/2/2018 8:27 PM (GMT 0)
ipoop, thx for the link! Let's hope I'm one of those that get into remission. I'm starting to see my options disappear.
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