Stelara not working (yet)

Hello,

I’ve been on stelara for nearly two months now (one dose) ... I’m doing badly and worse than I was a couple months ago, I think. Lots of urgency and going many times a day...

(I’ve already tried remicade and entyvio as well)

How long does it take to work ... does it sometimes take longer? How optimistic / pessimistic should I be?

I started Stelara september 2020 and no improvements, since 20th february I started taking every 4 weeks instead of 8 weeks

Eph, I am surprised that your doc wants your first biologic to be Stelara. Stelara seems to work better for Crohn's patients though it also can work for UC. Humira seems to work better for UC patients and is also a self injection with an epi pen like injector.

From my doc: "Humira has more risks than Stelera - risk of Lymphoma, Psoriaform rash, and sepsis. I tend to reserve that for 2nd line now. Entyvio would be my preferred agent over Stelera in Ulcerative colitis but currently have to get infusions only. This might not be as ideal for you with your busy lifestyle."

FlowersGal said...
As far as entyvio infusions interfering with a busy lifestyle — I haven’t had any issues with scheduling infusions at all in the last 4 years. Entyvio is not a weight-based medication and the actual amount of medication is quite small so only takes 30 minutes to drip. I’m at the infusion center about an hour every 8 weeks. Once I had to go a week early for my infusion because of a planned vacation but that wasn’t an issue.

Thanks!

tiredofallthispoop said...
I started Stelara last June, and also started a course of Budesonide (oral) and Uceris foam. (I had been off all treatments due to surgery in March, and Entyvio wasn't really working that great). In September a conversation with my GI led her to recommend me switching to every 4 weeks. It took a few months to get that in place but once I started that was the trick. By December/January I felt the best I had since dx five years before. Be patient and maybe tweaking it a bit will help.

Thanks so much! And, congrats!

@Hugo, look at tiredofallthispoops' comment.

chickenwings: Did you end up having a response? My doctor checked my blood levels of the drug and they were good about 3 months into my treatment. I've not been able to get off of steroids without symptoms coming back though. I'm now 5.5 months into Stelara. I was doing okay as long as i stayed on Uceris but after my Moderna shot, I started flaring pretty badly and just went on prednisone. I don't feel the Stelara has done anything for me and am waiting to hear back from my doctor about trying xeljanz now.

Eph: It's not an epi pen type injector like Humira. It's a syringe, but it's super easy to use. I can barely feel the needle at all. And yes, the first dose is done as an infusion. Once you've failed one biologic, you're more likely to fail others. If this is your first one, it has a higher chance of working for you. That is what my IBD specialist told me.

Thanks, all!

Got my Stelara infusion 4/1 and have my first self injection coming up 5/27.

Have been tapering off pred and doing pretty well. Hoping this all works out.