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Stelara/Ustekinumab Positive Experiences?


Many years I was on this forum white regularly seeking a diagnosis of IBD. It took some time but I eventually got that in 2014. Since then I have had many years of remission on Humira, but unfortunately it has stopped working and I’ve had a bowel resection since and am in a flare currently.

Having been discussed in the MDT meeting by my IBD team, it has been decided that I will start Stelara in a couple of weeks time.

I’ve read some good experiences elsewhere but it seems in this sub-forum there aren’t many! I’d love to hear if anyone has had a solid remission on ustekinumab.

Thank you,
It’s the best drug I’ve been on for Crohn’s and the only one to get my intestinal inflammation significantly better (they stop counting at 600 in my area. Remicade I couldn’t tolerate. Entyvio got briefly to 450 then back to 600+ despite doubling dose. Stelara got me to 140. Normal is 50 or less. Hoping stelara has maintained progress at next review due soon).
It did induce a bit of eczema and psoriasis but my GI thought I was pretty unlucky with that and not usual side effect.
Good luck with it.

my little penguin

Staff member
My kiddo has
He has been on Stelara since 2017.
No real issues -only one blip when insurance insisted we try every 8 weeks instead of the every 4 weeks has been on for years
He switched from humira as well
He was on humira for over 5 years
San Diego
I've been on Stelara for four years now, and with respect to symptoms it has kept me in a solid remission that whole time - with no side effects. My most recent colonoscopy showed signs of a low level of chronic inflammation in the terminal ileum, so it's not a total remission. The doc is waiting to do some addtional testing of Stelara blood levels and anti-drug antibodies to see whether we need to boost the dose or take some other action.

Overall, I'm quite pleased with Stelara. I just wish it weren't so sky-high expensive.
I have been on it for 4 days now, its the only drug my Gi could persuade me to take.

Felt normal before taking it.

I can tell its in me, used to go for a number 2 twice a day.

Now it's hard to go one time a day.

As time passes I'll try some food that used to really mess me up, see if I can eat it now I'm on stelara.

I have a real life friend on it, age 40 crohns 20 years, stelera for last 3 years, she claims its had a huge positive impact on her quality of life and works very well.

I was in a savage flair this summer couldn't even walk, full entral nutrition and prednisolene made the inflammation bugger off.
So far my son has been on it for 6 months, along with a special diet which he was on before he started it (initially all semi-elemental formula and still mostly semi-elemental formula). No side effects so far. Inflammation numbers all down to the normal range from abnormal previously. Poops improved from 2 rather soft per day to 1 fully formed.
I got my first dose September 27 and I was finally able to taper off the small dose of prednisone I was on for the last 10 months. I took my last prednisone last Wednesday.

Things aren't perfect yet but the fact that I was able to get off prednisone let's me know its working. I will be interested to see if it keeps me in decent shape the entire 8 weeks.