I am looking for info from people who was on Stelara for pouchitis. Do you have any side effects? Also, how long did it take for Stelara to start working?
Thank you
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Are you doing better Rhonda??? I thought about you the other day
Not really. Just had my stelara infusion this morning. Now wait to see what happens if anything
@RondaC posted:Not really. Just had my stelara infusion this morning. Now wait to see what happens if anything
Oh great!!! I am glad you had your first one! Let me know how you keep feeling on your journey. Hope you feel better dear 
My recollection is it took around 2-3 months for it to reduce inflammation. In my case, the 8 week intervals for injections were too long based on the level of drug in my system for therapeutic benefit by the end of the 8 week period. My GI is making effort to get insurance approval for six week injection intervals. I am unaware of any significant side effects from Stelara. I did notice a reduction with energy level but nothing dramatic.
Hi Ronda, my treatment with Stelara was for about 6 months. I had no side effects, but it didn't help for my pouchitis either.
My first infusion went fine. No side effects and I could tell it helped within a few days
@RondaC that’s so wonderful to hear, thank you sharing 😊
@RondaC posted:My first infusion went fine. No side effects and I could tell it helped within a few days
This made my day bright! I am happy you are okay
Hello fellow J-Pouchers. I am 70 years old. I had chronic UC since the age of 19, and bowel cancer at the age of 49. My final pouch surgery was in March 2005 and I developed pouchitis almost immediately. Cipro and flagyl worked well for me but I was taken off them because of side effects (nerve damage). I started Stelara last fall and have had three injections at 8-week intervals, with some success. Frequency of bowel movements has dropped from an average of 11 daily to 8.5 daily, which is significant to me believe it or not. My recent scope showed 40% improvement in the pouch in terms of the inflamed area but the disease is still active. I just had a call from my gastroenterologist who wants to move me to 4-week intervals immediately. The only side effects I have noticed are lower back pain and headaches but neither is constant.
Further to my earlier post, I started seeing a reduction in BMs after the initial infusion and the second injection, so it did take awhile in my case.
@Gary Ontario posted:Further to my earlier post, I started seeing a reduction in BMs after the initial infusion and the second injection, so it did take awhile in my case.
Happy you are doing better
Most people on here take Remicade for their pouchitis, but I am glad Stelara is working for you
I've had 3 doses of Stelara so far and have had a mild headaches as the only side effect and no obvious change in symptoms. My scope, however, showed 40% improvement . (I have Cohns disease now x 3 years plus the pouchitis off and on for 20 years, UC for another 20 before that)
I'd like to get off Stelara before getting a COVID vaccine, but my GI plans on doing blood levels before the next dose and possibly decreasing the interval between doses. I've read that it usually works in the first 6 weeks, but occasionally it can be many months. Even though I have no significant side effects I hate the idea of being 'immune compromised'. I'm always looking for success stories...
I asked my doc about the risk of taking the Covid vaccine while on Stelara. He said he's not overly concerned. I'm still waiting for my vaccine appointment
My doc says the COVID vaccine will only be 20-40% effective if you get it while on a biologic. I have no idea where he got that number, maybe its the effectiveness of any vaccine. So I am not worried about getting the vaccine, just that it won't protect me as well as if I got it when not on any meds . Gary, your Stelera schedule looks similar to mine- I just started in November, have had the initial infusion and now 2 injections, 40% improvement, possibly going to every 4 week dosing. I'm also in Ontario,( Thunder Bay), just curious as to where you are getting treated?
Hi Denise. I am in Thunder Bay as well. I had just told my wife this morning that your schedule seemed so similar to mine. I move to 4 week intervals in early April.
would it be OK if I kept in touch with you? Maybe by email instead of on this site? It's nice to have someone to talk to that understands what I'm going through and compare notes etc.
I agree it would be great to compare notes. Feel free to email me at finnster@shaw.ca. Cheers
@Gary Ontario posted:I agree it would be great to compare notes. Feel free to email me at finnster@shaw.ca. Cheers
I sent you my fundraiser link, hope you like it
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Jan