Ustekinumab (Stelara) 130mg/26ml IV infusion: My experience and info about Crohn's disease treatment

stephen_sanders2026-04-18 107 6

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I recently started treatment with Ustekinumab (Stelara) 130mg/26ml IV infusion for my Crohn's disease. The initial infusion went well, and I'm now moving on to the subcutaneous injections for maintenance. I wanted to share my experience and gather some information from others who have been through this. What was your experience with the initial IV infusion? Any advice on making the transition to injections smoother? Also, what are the common side effects people experience, and how do you manage them? I have heard about the potential for serious side effects and I need to know if anything can be done to mitigate those.

CrohnsDisease

Biologics

Stelara

stephen_sanders2026-04-18

1 min read

last active 1d ago

HOT

Comments (6)

abigail_day4d ago

Ustekinumab saved my life, literally. I was in a really bad flare-up before starting this treatment. The infusion was a bit long but manageable. I did experience some flushing and dizziness during the infusion but my doctor said that was pretty normal for the first infusion. Just make sure to bring someone with you if you can, in case you do feel lightheaded. Good luck!

timothy_thompson4d ago

I'm on week 3 of infusions and I feel like a new person. Chronic pain is manageable and I'm getting my life back. I did have some diarrhea and upset stomach in the beginning but that seems to have passed.

ronald_pierce4d ago

I have heard about a lot of people with Crohn's having a really tough time managing their weight but I've been stable since starting Stelara.

amber_sherman4d ago

Watch out for infections. I got a UTI after my first infusion, and it was brutal. Now I make sure to stay extra vigilant about hygiene and report any signs of infection immediately.

joan_kennedy4d ago

For me, the worst part was the injection sites. I found that applying an ice pack before and after helped a lot with the pain. It's definitely worth a try if you're struggling!

susan_wilson4d ago

I actually had an allergic reaction during my first infusion. Luckily, I was in a clinical setting and they were able to treat it right away. It’s scary but important to know the rare side effects. I’m feeling great since I started the injections.