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Stelara & How Long It Takes to Work

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Ulcerative Colitis
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Posted 4/9/2022 3:16 PM (GMT 0)
Was in a severe flare from Nov to Jan. Started Stelara (infusion) in Jan and in three weeks, the flare subsided, for a month. Then end of March the blood started slowly to come back right around the time of first injection. Now here I am this morning, and after just little amounts of blood for the last couple weeks, there was tons of blood in the toilet. The flare is back plain and simple.

I've talked to others on Stelara who say it's a good sign I saw results and that it may take a few injections ( and months) to really start working. Is that true? For those on Stelara, what was your pattern of seeing results? Were there ups and downs until finally things really started working? It's only been 2.5 months (with that month of remission in there) but it's just making me feel hopeless that I've already failed the drug before I barely started it.

Any thoughts would be greatly appreciated. Thx.
Posted 4/10/2022 1:50 PM (GMT 0)
David, the people you have talked to are right, it's a slow acting at first. I have not been on Stelara, however, from reading on here & the crohns forum it can take 5-6 months to fully kick in, not what you want to here I am sure. It's too hard to gauge how other's respond with any of these drugs, severity of the disease for starters.

If you aren't on rectal meds, you need to contact your dr tomorrow & request some. If you have a patient portal, send a message today.

I hope you get to feeling better soon.
Posted 4/10/2022 5:19 PM (GMT 0)
Hey Susie,

Thanks for this. Yeah that's what I figured. I am on other medicines as well including prednisone, Uceris, and Rowasa so I'm doing what I can to stay on top of things. Sometimes the flares are just too strong and break through even when I catch them early and even when I'm on a cocktail of medicines. But it gives me hope to know that Stelara takes time, as mentioned, that seems to be the common sentiment. I would consider myself in the minority if it worked in just a couple weeks! My doc said to give it more time as well so that's what I will do, perhaps by my next injection I'll be feeling better. Thanks.

D
Posted 4/11/2022 11:45 AM (GMT 0)
Stelera was the same for me. Infusion was good and then 2 months later my flare came back.
Posted 4/11/2022 1:21 PM (GMT 0)
Hey Ryan,

And where are you now with things? In a flare currently? If you started Stelara in October, seems like you were good until January. Then a flare? What has your doc recommended? How are you feeling? Sorry lots of questions. Just trying to gauge things.

Thanks,
D
Posted 4/11/2022 1:48 PM (GMT 0)
You can also get your dosage upped to monthly injections.

I originally started with 45mgs every 90 days (off-label dosage before it was approved for IBDs) and it did not work for me until they got me to 90mgs every 56 days and the IV loading dose.

You may want to add some steroids in or some other treatment on top of it for the meantime.
Posted 4/11/2022 2:44 PM (GMT 0)
Hey yeah I think that's what will likely happen. It's frustrating that I already might have to double the dose right in the beginning of trying Stelara. But I mean, I guess we have to do what we have to do. And I'm on 40mg prednisone daily, with Uceris 2x a day. So I'm going hard on the meds and have been for last couple weeks since I started seeing a small amount of blood. I just feel like these flares can just be relentless. For me, it's stress. Then seeing blood causes more stress and voila, here I am.
Posted 4/11/2022 5:15 PM (GMT 0)
Have you tried rectal meds? Colocort might be a better alternative and then work on cutting back on the Prednisone.
Posted 4/12/2022 12:32 AM (GMT 0)
Also, as you’re tapering down from Prednisone there are sometimes mgs levels that people flare a little bit like 40, 20 and 10 mg levels. Sometimes it depends on how long you’ve been on prednisone for. Sometimes just bumping it up a little bit and then slowing the tapper down a little bit helps out.
Posted 4/12/2022 12:32 PM (GMT 0)
Hey D,
Exact same. I’m still somewhat flaring. We did flagyl and enticort. I did the infusion and 2 at home injections and after the second I was already flaring. Then did the third in week 6 slightly early to see if it would help and right now I’m still going 6-8 times a day with visible blood but I will say it’s kinda starting to get better but I’m just waiting on insurance approval for new meds. It’s kinda weird because somedays the flood gates are opens and today is somewhat normal. I dunno 🤷‍♂️. Good luck. I hope you get some relief.
Posted 4/15/2022 2:17 AM (GMT 0)
It didn't work for me. I believe I waited about 5 months before giving up on it and moving to Xeljanz (infusion plus 2 at-home injections each 8 weeks apart). I couldn't get off steroids the entire time without symptoms returning. Had a scope near the end of it which confirmed I was flaring. Didn't want to bother trying to up my dose since my blood levels were normal, although my GI did give me that option. Good luck.
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