Stelara Levels

[pdx]

E is currently symptomatic and Stelara levels just came back at 2.8 mcg/mL at 6 weeks post injection. (She is currently on every 8 week dosing.) A quick Google search makes me think this is low. Anyone have experience with what levels led to increased dosing? Results just came back so I haven't heard from her doctor yet.

 

[Pilgrim]

H's level of 11 at q4 dosing was considered good but I wasn't told the range when she moved there from 8 week dosing.

 

[my little penguin]

https://jamanetwork.com/journals/jamadermatology/fullarticle/2751372
Article is for PSA level of 2.8 was low for them

 

[my little penguin]

Barnes cited recent guidelinesopens in a new tab or window that recommend a maintenance dose of 4.5 μg/mL ustekinumab for patients with Crohn's disease to achieve an endoscopic response.

"We know these patients have low levels -- that's why they dose-optimized them," Barnes told MedPage Today.

"What would be really helpful to know is, of the people who did get better, what was their dose," he said, and whether the dosing in this study matched the 4.5 μg/mL level previously established.

https://www.medpagetoday.com/meetingcoverage/ccc/84546

 

[pdx]

Her doctor wants to do a scope before deciding what to do; she's scheduled for the end of the month.

 

[Maya142]

I’m curious - why would the doctor wait if she has levels that are too low? Because she (or he) is thinking that E needs to change biologics? I guess I’m wondering why not up the frequency to every 4 weeks considering you have levels that are too low at 6 weeks?

Have you ever considered trying Humira, considering she responded well to Remicade and MTX for a while? I know now most doctors change the mechanism of action after failing one drug, but back when anti-TNFs were the only option, there were lots of kids on here that did well on Humira after Remicade or vice-versa (including both of my daughters).

The other options you have are Skyrizi and Rinvoq…Rinvoq was just approved for Crohn’s and while it comes with more risks, it has the upside of being a daily pill, which I’m sure your daughter would love.

 

[pdx]

Her doctor considers her level to be "in range." The scope will happen before we hit 4 weeks on the current dose, so it doesn't seem unreasonable to wait for those results.

 

[my little penguin]

My thoughts
Insurance is becoming more of a pain
Scoping while having symptoms and low levels
Documents the need for Stelara every 4 weeks
And documents if there is a need to change meds
Good luck with scopes
And big hugs to her

 

[crohnsinct]

Another reason they scope is to confirm symptoms are coming from IBD rather than a functional cause ie: IBS. How is her calpro and other inflammatory markers?

So sorry to hear she is struggling again. Hopefully a bump up of Stelara will do the trick.

 

[Maya142]

That makes sense, though from the studies I’ve looked up, her levels seem to be on the low side.
Poor E - I’m glad she was able to get scopes scheduled after the semester ended!! Is she done with her sophomore year in college or am I remembering incorrectly?

 

[pdx]

Latest calpro was 290, which isn't terrible. And she is finishing her junior year already, if you can believe that.

 

[crohnsinct]

That's enough to cause symptoms. I am going with disease activity. Sorry

 

[Maya142]

My guess is also that with an FCP of 290 that there's a very good chance there is inflammation causing the pain.