Stelara Levels

[Anna's Bandit]

I cannot remember exactly when I started my Stelara injections. I think I had the infusion three years ago in October 2021. After that I started at 90ml every 8 weeks. Then started 90ml every 6 weeks a year ago, September 2023. Attached are my lab reports about my Stelara levels from April and December of 2022 and from September 2024. I am seeing the NP at my Gastroenterologist office this afternoon. I am still taking my methotrexate and folic acid. The NP tried to wean me down and then wean me off of the Budesonide during the time of around 2022/2023. This didn't work out well for me because I got sick in March 2023 after totally stopping the Budesonide. After that I started back on the full dose of 9mg a day.
Thank You for your input.

 

[Anna's Bandit]

Oops. Here are the reports.

 

[Scipio]

The good news is that these reports indicate that you have solid levels of Stelara in your blood and no detectable levels of anti-drug antibodies that could neutralize the beneficial effects of the drug. The bad news is that you have not achieved disease remission with Stelara and still require a boost from the steroid budesonide.

Question: were these blood specimens drawn at "trough" (shortly before your next injections was due)? If not they should have been. You want to know the lowest concentration that the drug level falls to during the 6 or 8 week cycle.

If these are trough values, then it looks to me like Stelara isn't working very well for you. I suggest you talk to your NP or GI about considering switching to another biologic - first maybe to an in-class drug such as Skyrizi and failing that to another class of drugs such as an anti-TNF or maybe even Entyvio.

 

[Anna's Bandit]

The good news is that these reports indicate that you have solid levels of Stelara in your blood and no detectable levels of anti-drug antibodies that could neutralize the beneficial effects of the drug. The bad news is that you have not achieved disease remission with Stelara and still require a boost from the steroid budesonide.

Question: were these blood specimens drawn at "trough" (shortly before your next injections was due)? If not they should have been. You want to know the lowest concentration that the drug level falls to during the 6 or 8 week cycle.

If these are trough values, then it looks to me like Stelara isn't working very well for you. I suggest you talk to your NP or GI about considering switching to another biologic - first maybe to an in-class drug such as Skyrizi and failing that to another class of drugs such as an anti-TNF or maybe even Entyvio.

I did my every 6 week Stelara injection 90ml on August 11th at home. My Stelara blood draw was done two days before my next Stelara injection that was scheduled for September 22nd.

I just saw the NP at my GI office yesterday ( actually I was there to follow up about a fissure .) She mentioned to me about getting a colonoscopy next year. I will follow up with the NP in January 2025 to talk about the fissure, colonoscopy and what our next step will be in my treatment plan. The NP and myself both realize that I cannot keep taking the corticosteroids. But then of course she had to mention surgery. My GI always mentions surgery although this is the first time the NP has mentioned surgery. I have stricture and inflammation of my terminal Ilieum. I really would not want to have surgery unless it was completely necessary. I don't know if the situation would be the removal of the terminal llieum and a new biologic with no corticosteroids or if the situation would be just changing my biologic and not get surgery. I really dislike my Gastroenterologist and he's not people friendly and so I'm really happy to see the nurse practitioner instead of him because I can speak to the NP more easily and we can communicate better. Thank you so much for your input because it really helps me to try to figure things out.

Sidenote : I was first diagnosed with Crohn's in 2018 and I did take Humira for around 3.5 years and then it quit working, that is when I was switched over to the Stelara. When I started the Stelara I was on 90 ml every 8 weeks and a year ago I was switched to 90 ml every 6 weeks. I think I've been on the Stelara for maybe 3 years. [ during my previous previous visit with the NP I am actually the person that brought up the fact that my Stelara levels had not been checked for 1.5 years. I had also mentioned about checking my calprotectin levels but the NP didn't think that was necessary. ] My calprotectin levels have been
2018 - 694
2018 - 420
2020 - 668
2021 - 568
2022 - 522
2023 - 176

I have actually been sick with bowel issues since 1997, starting with bile acid malabsorption which I didn't know I had until several years later and in 2006 I was diagnosed with ulcerative colitis and took medication for that. Then in 2018 I was diagnosed with Crohn's, so it's been a pretty long journey.