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Xeljanz dosage

Chronic Illness Forums
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Ulcerative Colitis
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MLP2060
Regular Member
Joined : Jan 2016
Posts : 49
Posted 10/16/2019 6:47 AM (GMT -7)
I just finished 2 months on Xeljanz. I will be on a maintenance dose of 5 mg twice daily down from 10 mg twice daily. Has anyone maintained this dose of 5 mg twice daily without recurrence of symptoms? I've read that some people have to go back on 10 mg due to recurrence of disease.
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 129
Posted 10/16/2019 8:25 AM (GMT -7)
i am suppose to reduce mine from 10mg twice daily to the the 5mg after the end of this week, being my first month. Very hesitant to do so. The dosing on this drug, due to it being so new to the UC world is guessing at best from what I can see.
2017- January-diagnosed distal colitis
2017-March hospitalized for pan colitis
Currently on remicade
Started Xeljanz 9/19
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MLP2060
Regular Member
Joined : Jan 2016
Posts : 49
Posted 10/16/2019 10:38 AM (GMT -7)
Hugo - I am hoping that reducing it will not impact anything. Stay in touch and let me know how you do, and I will do the same. Started the 5 mg today.
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suzy-q
Regular Member
Joined : Sep 2015
Posts : 238
Posted 10/16/2019 12:13 PM (GMT -7)
My husband has been on Xeljanz almot 3-1/2 years -- full remission. 20 mg / day. This year his doctor told him he should try to taper down to 10 mg due to the reports about thrombosis side effects. He was on 15 mg for about 5 weeks when symptoms seemed to come back for first time since he went on Xeljanz. So he went immediately back up to 20 mg and after about 7-10 days symptoms are fully gone. So he is very reluctant to try to go down again. Doc said maybe they would try again next spring.

the medical community has no idea. He is not high risk otherwise for thrombosis, and it has been a great drug for him.
Spouse diagnosed with UC in 2013. Remicade, humira, Entyvio did not work. Only thing that worked was prednisone. March 2016 started Xeljanz. In remission within 2 months. Worked with endocrinologist to get off prednisone, and neurologist to deal with neuropathy in feet that appeared with prednisone taper. Took over a year to completely get off steroids -- tapered .5 mg every 4 weeks.
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limey
Regular Member
Joined : Sep 2016
Posts : 139
Posted 10/17/2019 5:57 AM (GMT -7)
I like your husband tried to go down to 5 mg and found the effectiveness was reduced so went back up to 10 mg twice per day.. I have found it an excellent drug at this level almost like not having UC at all..
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MLP2060
Regular Member
Joined : Jan 2016
Posts : 49
Posted 10/17/2019 6:20 AM (GMT -7)
I am hoping reducing to 5 mg won't cause a problem. I have been experiencing joint pain as a side effect, and I'm hoping that going down to 5 mg will help with the pain and also manage the disease adequately enough. It's a wait and see situation right now. I am working through the pain, but it hasn't been easy. Have others experienced any joint or muscle pain, stiffness??
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limey
Regular Member
Joined : Sep 2016
Posts : 139
Posted 10/20/2019 11:39 AM (GMT -7)
As I posted recently I had to give up my Xeljanz on Oct 2 because of a knee replacement on Oct 9
The op went well and I have not had any Xeljanz since the 2nd. My BMs are 1or 2 and perfectly formed stools. Prior to this I was getting pain in my knee that I had replaced in 2015. Without the Xeljanz I have no pain now in this knee
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talliecat
Regular Member
Joined : Jan 2009
Posts : 48
Posted 10/21/2019 10:18 AM (GMT -7)
I tried to go down to 5mgs 2 X a day and my symptoms started coming back . I also noticed the joint pain on the lower dosage. I went back up to 10 Mgs 2 X a day and my symptoms subsided. For me the benefits of the drug outweigh the risks.
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MLP2060
Regular Member
Joined : Jan 2016
Posts : 49
Posted 10/22/2019 6:21 AM (GMT -7)
talliecat - how long did it take for your symptoms to return once you dropped to 5 mg? Did you have joint pain on 10 mg?
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talliecat
Regular Member
Joined : Jan 2009
Posts : 48
Posted 10/25/2019 2:41 PM (GMT -7)
The joint pain started almost immediately but I didn't make a connection right away. I would say it took about a month and a half for the symptoms to start creeping back in.
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