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Increasing Stelara Dose

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Crohn's Disease
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Posted 9/13/2021 11:35 PM (GMT 0)
Hello All!

Haven't posted regularly the last decade. I had to make a new login last summer since I couldn't remember my old login info. It's been a long time. I truly wish that all of you are happy and healthy smile

So, I have a question for those of you on Stelara. I started Stelara in 2018 with wonderful results. I take 90 mg every eight weeks. It was working so well. Better than any medication I've been on since being diagnosed in 2003 at 13 years old. However, back in July, my fistula returned and now this past week I've started seeing blood and mucus in my stool again. It's so disheartening after feeling so well. I'm getting blood work to see if perhaps I just need to take it more often or if it has just stopped working. Has this happened to anyone else? If so, how did you react to more frequent dosing?

Another quick question. I've been on Remicade, which worked very well at first (This was the first biologic I took in 2003) but then I developed antibodies to it. Humira didn't work for me either. Anyone here on Entyivo after being on other medications? If so, how did that work for you?

Thank you all so much!
Posted 10/3/2021 1:24 AM (GMT 0)
Hi isaac,

Welcome back, but sorry it's for these reasons.

I've been on Stelara since late 2019. At first, it seemed to be the next best thing since Remicade (Remi worked wonderfully for about a year, then gave me pustular psoriasis). But lately its effects seem to have waned a bit. Haven't spoken to my GI about my Stelara suspicions yet, so I'm unable to advise on more frequent dosing (sorry).

As for Entyvio, I tried it before Stelara and it did nothing for me. And I was on it for 6+ months. My doctor even upped my dosing to every 4 weeks, but after a couple months of that and still no change, I decided to switch to Stelara. Didn't see the use in continuing with "Entyvi-no" (lol) a minute longer since it wasn't doing jack. I do believe others have had luck with it though.
Posted 10/4/2021 10:54 PM (GMT 0)
Also developed issues with Remicade years ago and have fistulizing Crohn's. After trying a two others (Cimzia, Humira), I landed on Stelara and am still on it. I take it every 4 weeks (have since the beginning) and, while I haven't had healing, I haven't developed any new ones. My GI also combines it with Azathioprine (currently at 150mg/day but hoping to taper after a surgery coming up) and antibiotics on the regular (currently Cipro).

Has you doc suggested testing levels? If not, I'd ask about that. They have the draw right before your next dose so you know your lowest level. While there is no absolute number, they can tell if it is in the range of where they'd want it to be to have an effect for your type of Crohn's.

Best of luck!
Posted 10/5/2021 12:54 AM (GMT 0)
Hey there. I haven’t posted in a while. I am also on Stelara, taking it every 8 weeks. I still have inflammation and diarrhea and such. GI checked my levels, and it showed my system metabolizes the Stelara too fast so little is left. GI wants to increase me to every month. However, I am on Medicare and since this drug is a level5 I still,pay about $1,260 per shot. This totals $7,500 a year. But if we’re to go monthly it doubles to over $15,000 just for this drug. Mind you, I take 14 other daily prescription medications and I am on disability. Medicare does not allow the copay assistance nor do I qualify for any other assistance as I am just above the min.

So I am having another scan Wednesday to see the current inflammation and narrowing. If it has gotten worse since Jan the. I will be hams third resection surgery. If it is the same, we will look at steroids and such to mix in with the Stelara. I also tried entyvio….it didn’t work. GI said they usually see good results with younger people on entyvio. I have tried s else. Ugh.
Posted 10/8/2021 1:16 AM (GMT 0)
Hi There!

Stelara totally saved me from fistula hell. I started in May 2017 and still on it every 8 weeks. I've only had 1 abscess since and am very stable. If I ever wobble or fistulas return my GI will increase to 6 weeks. I've done every other drug with no help at all so really there's no other choices for fistulating crohns.

You could try taking wild oregano oil, vitamin A, turmeric (I take 10000mg daily) to see if that helps. I also used Healing Bottoms Turmeric suppositories when I felt like I had an abscess.....the discomfort completely subsided after a few days.

Hope this helps.
Posted 10/18/2021 5:06 AM (GMT 0)
Hey guys,

Thanks for your replies. Wasn’t sure if anyone would reply! The forum has definitely slowed down from on I was on it regularly ten years ago.

I did end up having a blood test to see the level and it turns out that my body is metabolizing it too fast. Luckily there were no antibodies detected. We’re increasing the dose to every six weeks to see how I respond. Hopefully well!

Stelara was amazing for me. Hopefully it’ll continue to be with the increased dose. I’ve had Crohn’s since I was 13. Diagnosed in 2003. Remicade helped tremendously the first time I was on it in 2003 but lost effectiveness after a year.

I’ll keep you guys updated.
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