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Ulcerative Colitis
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Posted 8/3/2021 1:50 AM (GMT 0)
Sara, hopefully you’ll be ok. I started flaring before the last shingles vaccine. Kept complaining about constipation. Had inflammation and constipation. Good duo. Scope showed quite a bit of inflammation. Kept thinking the Entyvio would start working again. Guess I was delusional. Was hopeful.
When was your first one? I waited quite a while. Just got a reminder from the pharmacy that I was due.
Intestines seem to be calming down. Took it on Friday.
Posted 8/3/2021 2:29 PM (GMT 0)
My first one was about a month ago. I'm still having some UC symptoms...some days are almost normal but other days are not normal at all. I have no idea if Xeljanz is helping but I'm not in remission and it's almost the 2-month mark. I was supposed to give it 2 months. It may be helping a little. Glad you're feeling a little better. Constipation can be even worse than diarrhea, in my experience.
Posted 8/4/2021 2:15 AM (GMT 0)
Got the ok today to start Stelara ASAP. We shall how fast they move on it.
Budesonide finally is starting to work. Specialist said as soon as I start the Stelara to go off of the Budesonide.
Do I have to wean off of it? I’m taking extended release 9 mg. You really can’t split those. I’m sure I won’t be getting the stelara for a week or two.
Posted 8/4/2021 1:23 PM (GMT 0)
As soon as you start it? That's odd. It's not going to work immediately. You don't have to wean off but my recent GIs have had me do a taper of 2 days on, 1 day off, and then every other day for a few weeks. It's not dangerous to just stop it though.
Posted 8/4/2021 4:10 PM (GMT 0)
I agree with Sara -- seems odd to stop the budesonide as soon as you start Stelara. I would want to stay on it until you are on the maintenance doses as it will take a while for Stelara to kick in other wise you are likely to back slide pretty quickly for a bit.

The only time I tapered Uceris was when I had been on it for several months. Then I did a taper like Sara mentioned.

Good luck with the Stelara!!
Posted 8/4/2021 4:36 PM (GMT 0)
Have no idea why he said it! I don’t have to. I have a refill . I said I thought it was working. Well maybe a little. So much noise coming from my stomach. Not sure what that’s about?
Got a script of cortiform too. That usually helps bit.
Posted 8/5/2021 1:46 AM (GMT 0)
I had SO much noise in my colon when I was on budesonide! It was near constant rumbling.
Posted 8/5/2021 1:45 PM (GMT 0)
I’ve definitely had a lot of gurgling noises since I’ve been on budesonide
Posted 8/5/2021 1:53 PM (GMT 0)
I never had gurgling on it myself. That sounds like a flare symptom to me. Good luck with the Stelara. It did nothing for me. Hope you have better luck.
Posted 8/5/2021 3:46 PM (GMT 0)
I have no symptoms at all since taking it and on the papers the meds came with it says excess gas can be a side effect so I’m assume that’s what the gurgling is since I also have more gas than normal. I feel pretty great so I hope it’s not a flare symptom lol that’s not a flare symptom I normally have. Hoping to start a biologic soon anyways, I feel like there’s so much waiting
Posted 8/5/2021 8:33 PM (GMT 0)
Well if I’m good with Stelara after a few days just discontinue the Budesonide. If not he’ll write a script for 3 mg not extended release. Then stay on for a while and hopefully wean when I can.
I start the Stelara tomorrow!👍
Posted 8/6/2021 10:29 PM (GMT 0)
Good luck Faith! 🤞
Posted 8/7/2021 11:39 AM (GMT 0)
Well now have to wait till Tuesday. They weren’t able to get the Stelera in till Monday afternoon. I hope it helps. I’ve been pretty lucky with all the biologics for a period of time. After 2-3 years they lose their effectiveness. 🤞
Posted 8/9/2021 5:30 PM (GMT 0)
There is definitely a ton of waiting. Good luck, Haley and Faith!
Posted 8/14/2021 10:35 AM (GMT 0)
Had my loading dose of Stelera on Tuesday. Maybe it’s my imagination but I felt better in two days. Two weeks before I had my entyvio. Still on Budesonide. How long should I stay on the Budesonide before tapering. Have the 9 mg extended. So I would have to go every other day. Called GI again ,he said when I think I’m feeling better. I’m feeling better ! Is it too soon?
In the mean time I went and got the 1st Covid shot. Friends and Doctors made me crazy.
Did it right before the Stelera. I will take the second vaccine. Not taking any boosters.
So not sure what I should do??
Posted 8/14/2021 3:17 PM (GMT 0)
Faith. I was like you. The night of my loading dose of entyvio I felt strong for the first time in a year. Didn’t know if it was my imagination or hopeful thinking but at the time I was pretty weak and depressed. Anyway seemed like that initial feeling turned into remission for me.

How often do you take stelara? As I recall I immediately started weaning off my prednisone when I started entyvio and it took me a couple months to stop it. So … I dunno? Maybe give it a week or another dose or two?
Posted 8/14/2021 7:50 PM (GMT 0)
Just had that loading dose. It was an hour unlike Entyvio which was a half hour each time every 4 weeks. The next injection is in 8 weeks. I guess if that doesn’t cut it you can go to every 4 weeks.
Well I didn’t take the Budesonide today. Going to take it every other for a week and see what happens. GI said call him if I have problems. They are extended release so you really can’t split the dose. He did say he’ll give me 3 mg ones if I need it still them. Have my fingers crossed that it works. Hate taking more meds.
I did really well on Entyvio. Three years in remission. That accident I had a few months back did a number on me.
Posted 8/17/2021 1:33 PM (GMT 0)
I would go ahead and taper the budesonide if you're feeling better. I always knew if I was getting worse within a week, even at the every other day dose.
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