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Any Xeljanz success stories?

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Ulcerative Colitis
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7133
Posted 5/23/2021 12:16 PM (GMT -6)
I hear a lot about this med working for only a few months. Anyone have a success story with Xeljanz? How were the side effects? I find this med's side effect profile terrifying and am scared to try it. What labwork did your doctor have you do prior to starting and while on this medication? My GI mentioned getting a cholesterol panel done at baseline. How often do you have to have it checked thereafter? Anything else? Thank you.
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 251
Posted 5/23/2021 2:16 PM (GMT -6)
It has worked for a long time for many people. For me it worked perfectly for 18 months then I had a loss of response. It is an excellent drug that has a very fast reaction time.
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EveryStone
Regular Member
Joined : Jul 2015
Posts : 26
Posted 5/23/2021 3:14 PM (GMT -6)
No more accidents. No more adult diapers. It gave me my life back. As a bonus it cleared my 40 year long skin problem.--- I had one short term ibd- like episode that was cleared up by adding hydrocortisone retention ememas for a short time.--- Bloodwork every 3-4 months. Next one June 1st.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7133
Posted 5/23/2021 4:38 PM (GMT -6)
Thank you! Good to hear.
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Hambo88
Regular Member
Joined : Feb 2018
Posts : 199
Posted 5/23/2021 5:23 PM (GMT -6)
i had very late effect after half year i had to take steroid (10 mg) and then half a year i had to started to decrease it.
every 2nd month i need to check my blood.
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Hambo88
Regular Member
Joined : Feb 2018
Posts : 199
Posted 5/23/2021 5:26 PM (GMT -6)

Hugo18 said...
It has worked for a long time for many people. For me it worked perfectly for 18 months then I had a loss of response. It is an excellent drug that has a very fast reaction time.

I did not hear about anybody till now who said that xeljanz stopped to work.
It is also happen? i thought that it only can happen bioology medicine like entivio etc.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7133
Posted 5/23/2021 5:38 PM (GMT -6)

Hambo88 said...

Hugo18 said...
It has worked for a long time for many people. For me it worked perfectly for 18 months then I had a loss of response. It is an excellent drug that has a very fast reaction time.

I did not hear about anybody till now who said that xeljanz stopped to work.
It is also happen? i thought that it only can happen bioology medicine like entivio etc.

I've heard it from many people on another online forum that it worked for a few months and then stopped. Any of our meds can stop working over time, unfortunately.
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 251
Posted 5/23/2021 5:47 PM (GMT -6)
Well it happened with me unfortunately.
I was perfect and then after 18 months I get mild symptoms. Totally refractive to all steroids and now suffering from some nasty proctitis that I can’t get under control. Hasn’t turned into pancolitis as it did 4 years but for some reason the disease found a way to override the Xeljanz. Trying out Stelera.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7133
Posted 5/23/2021 7:42 PM (GMT -6)
That stinks. Good luck with the Stelara. Part of me just wants surgery. I'm sick of all of this.
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TP177
Regular Member
Joined : Feb 2010
Posts : 137
Posted 5/23/2021 8:44 PM (GMT -6)
Eight month flare. Humira fail Stelara fail


Day 4. Xeljanz. Actual poop. Miracle …happy to answer any questions I haven’t gotten my blood work back but the doctor did tell me to expect a large spike in cholesterol in the first three months. With no prior history that should resolve as treatment goes on. It’s saved me from surgery
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7133
Posted 5/24/2021 7:56 AM (GMT -6)
That's awesome! It's amazing to hear how fast it works for some people. I'll be interested to see what my cholesterol does on it since I'm vegan and don't get any cholesterol in my diet (not sure if that matters).
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limey
Regular Member
Joined : Sep 2016
Posts : 185
Posted 5/25/2021 6:44 AM (GMT -6)
I have been on Xeljanz since two years last March and it has been a game changer for me.
It started to work a couple of days into starting and has been good ever since.
I might comment that I do live on a restrictive diet but a small price to pay for living a normal life where I don't have to research toilets.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7133
Posted 5/25/2021 8:08 AM (GMT -6)
That's great to hear, limey! I'm still waiting on pre-approval and also my GI is making me get another scope before he will let me switch. I'm waiting on them to let me schedule the scope so I can move on. So frustrating. :/
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