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Stelara: Who's Taking It?

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Ulcerative Colitis
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Posted 1/10/2022 11:11 AM (GMT -8)
Hey there,

Inflectra recently stopped working for me and we're onto a new biologic. After a lengthy conversation, my GI recommended Stelara for me. He said my body has found a new way to inflame and perhaps Stelara will help. He also said it has less side effects than Inflectra which is good. I'm just interested in people's experience with Stelara and if it's been helpful and if there are common threads of side effects. I get my initial infusion this Thursday and then I know there are subsequent injections. So it's already decided. Just want to hear what other people think.

Thanks,
D
Posted 1/11/2022 12:10 PM (GMT -8)
I love it. After five years of nothing working, with horrible side effects, Stelara has given me my life back. The injections are easy peasy. It did take awhile to really get back to normal. I ended up moving to monthly injections after six months and that was the key. I hope you also have great success with it.
Posted 1/12/2022 10:25 AM (GMT -8)
I've been on it for a long time. I love it too. It didn't work well for me until I was able to get the IBD dosing because originally it was only approved off label and at psoriasis dosing (prior to the FDA approving it for CD at the high dose).

I was even able to go off of it for 6 months while I had my hip replaced (thanks, Prednisone) and was able to start back up without any antibodies.
Posted 1/13/2022 7:01 AM (GMT -8)
I'm on Stelara and although it's early days it's working well for me. I'm about to have my 3rd dose in 2 weeks time, but my faecal calprotectin is normal, and I currently have no UC symptoms.
Posted 1/13/2022 7:03 AM (GMT -8)

tiredofallthispoop said...
I love it. After five years of nothing working, with horrible side effects, Stelara has given me my life back. The injections are easy peasy. It did take awhile to really get back to normal. I ended up moving to monthly injections after six months and that was the key. I hope you also have great success with it.

That's interesting you're on monthly injections. I've been started on a 3 monthly dose, which I think is quite far apart, but I'll only be moved to more frequent injections if I start to flare.
Posted 1/13/2022 7:09 AM (GMT -8)
Just to add to this, so far the only side effect I've had was from the initial IV dose. I got palmar-plantar psorasis (ie on the palms of my hands and soles of my feet). My skin peeled and it was horribly itchy but I cleared it up with some cream and it hasn't recurred with the lower injection doses (so far).

I have psoriasis so maybe this makes me more susceptible to this particular side effect.
Posted 1/13/2022 2:56 PM (GMT -8)
Did nothing for my UC. Only side effect was a rash caused by yeast on the skin, was easily treated by a dermatologist, never came back.
Posted 1/13/2022 2:57 PM (GMT -8)
You're supposed to inject every 8 weeks. I'd ask about the 3 monthly thing.
Posted 1/15/2022 7:08 AM (GMT -8)
I’m on it! It worked pretty quickly. Wonder if you can have it pushed up to every 6 weeks.
Except for the recent colonoscopy that aggravated the UC , it’s been good
Posted 2/7/2022 6:50 PM (GMT -8)
I'm also on it. Had the loading dose with no side effects and felt great the first 8 weeks of it. I then had my first injection about a month ago. The only symptom I'm experiencing is quite a bit of gas before each bowel movement. That has me a little concerned since that's usually been an indicator for me that something isn't right.
Posted 2/7/2022 11:17 PM (GMT -8)
as i know stasticaly stelara is less effective for colitis than the crohn.
My GI told me it.
Posted 2/8/2022 5:58 AM (GMT -8)
Have been on it for 6 months. Loading dose was great. After that it was downhill for me. Everyone is different. Hope to be starting Remicade in 2 weeks.
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