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Dream Crusher

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Ulcerative Colitis
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 251
Posted 6/8/2021 5:12 PM (GMT -6)
Man o man is this disease a dream crusher. In a 90 day proctitis flare after Xeljanz failed. Steroid refractive and have moved to Stelera. No response after almost 4 weeks. Wake up this weekend and have zero blood and normal stools. Fart all day without consequence. I am having a response! Next day same thing! Then two days of back to blood and the same symptoms. Why does the disease even try to trick me that I am having a response to my new treatment!!!
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VanJordan
Regular Member
Joined : Dec 2019
Posts : 429
Posted 6/9/2021 3:47 AM (GMT -6)
Besides the biologic, what else are you doing to try and help yourself? Any diet changes? Supplements?
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 251
Posted 6/9/2021 7:33 AM (GMT -6)
I have always been a Mediterranean diet subscriber. Vitamin D, slippery elm. Currently doing Hyperbaric oxygen therapy as well.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18923
Posted 6/9/2021 7:42 AM (GMT -6)
Hugo, 4 weeks into Stelara is not very long. It's encouraging that you saw some improvement, however, 90 days into a flare it's not going to work right away. When trying something new it's better to look at things a week at a time instead of daily. The daily thing will cause a lot of extra stress which will help nothing.

Good luck.
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tiredofallthispoop
Regular Member
Joined : Jan 2017
Posts : 241
Posted 6/9/2021 4:08 PM (GMT -6)
When I started Stelara I also started Budesonide both orally and foam. After four months my doctor switched me to every four weeks and that did the trick.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7135
Posted 6/9/2021 4:23 PM (GMT -6)
It's done nothing for me after 6 months. If you have already failed most biologics, your chances of Stelara working are quite low. That is what an IBD specialist told me.
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 251
Posted 6/9/2021 6:48 PM (GMT -6)
Funny my GI thinks Stelera has a good profile with non naive biologic patients.
I don’t see that I failed remicade ad xeljanz. In fact they worked very well for me for 18 months each. Yes, being non naive to biologics hurts your chances.
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suchatravesty
Regular Member
Joined : Dec 2017
Posts : 346
Posted 6/9/2021 7:43 PM (GMT -6)
Welcome to the club. I have failed everything else (except Xeljanz) and have been on Stelara since early April and we went straight to 4 weeks instead of 8 weeks because my flare is not even responding to 60mg of prednisone, and it has done *nothing* for me. I spoke to two IBD specialists and they told me that at this point, it is clear it isn't going to work. Hell, multiple courses of IV steroids (30mg of Solu-Medrol twice a day) after blood transfusions slightly lessen the blood and D, but won't stop it, and within a few days of leaving the hospital, I am back at square one. No Xeljanz for me -- both specialists say there I too low of an efficacy rate for severe pancolitis UC, and with the new warnings, it isn't worth the risk.

Ask your GI to test your levels before your next dose -- maybe 4 weeks will work if you have had some response? Good luck
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7135
Posted 6/9/2021 7:50 PM (GMT -6)
It says right on the Stelara website that it's way less likely to work if you've failed other biologics. That just means they either never worked or stopped working. Good luck though.
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Hugo18
Regular Member
Joined : Mar 2017
Posts : 251
Posted 6/9/2021 10:25 PM (GMT -6)
Xeljanz has a lower rate with non naive people and it was effective for me. Studies show that Stelera is lower for biologically exposed people but still can work. Generally studies show it is 10% lower for bio exposed individuals.
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