If you’re living with Crohn’s disease, you know the feeling all too well—the cautious hope that comes with starting a new treatment, followed by weeks or months of wondering if it’s actually working. You scrutinize every symptom, every bathroom visit, every energy level change, trying to decode whether your body is responding to yet another medication in your IBD journey.

For those of us on ustekinumab (Stelara), this uncertainty can feel particularly intense. Unlike some treatments where you might feel better relatively quickly, biologics often work more subtly, and it can take months to know if they’re truly helping heal the inflammation in your intestines. But what if there was a way for your doctor to look at your blood work and get a clearer picture of whether your treatment is on track?

Summary of Medscape

New research suggests that measuring ustekinumab levels in your blood could help doctors make better treatment decisions, particularly when it comes to achieving endoscopic healing—essentially, seeing actual healing of your intestinal lining during a colonoscopy or other scope procedure.

The study, which combined data from over 1,800 patients across 16 different research groups, found a clear connection between drug levels and healing outcomes. Specifically, patients whose ustekinumab “trough levels” (the lowest amount of drug in your system right before your next dose) were above 1.1 µg/mL were significantly more likely to show endoscopic response and remission.

This builds on what doctors already know from other biologic medications like anti-TNF drugs (such as Remicade or Humira), where monitoring drug levels has proven helpful for optimizing treatment. However, until now, there hasn’t been clear guidance on what ustekinumab levels to aim for.

The research also looked at anti-drug antibodies—essentially, when your immune system starts fighting against the very medication meant to help you. Fortunately, the study found that rates of these antibodies against ustekinumab were relatively low, which is encouraging news for long-term treatment success.

This post summarizes reporting from Medscape. Our analysis represents IBD Movement’s perspective and is intended to help patients understand how this news may affect them. Read the original article for complete details.

What This Means for the IBD Community

This research represents a significant step toward more personalized IBD care, but let’s break down what it could mean for your day-to-day experience living with Crohn’s disease.

Moving Beyond the Guessing Game

Right now, if you’re on ustekinumab and not feeling as well as you’d like, your doctor might suggest increasing your dose frequency or switching medications entirely. But without knowing your actual drug levels, these decisions often feel like educated guesses. This research suggests that a simple blood test could provide valuable insights into whether you need a dose adjustment or if the medication might not be the right fit for you.

Think about it this way: if your ustekinumab levels are well below that 1.1 µg/mL threshold, your doctor might recommend increasing your dose or frequency rather than abandoning a potentially effective treatment. Conversely, if your levels are adequate but you’re still struggling with symptoms, it might signal that ustekinumab isn’t the right medication for your particular case, and switching to a different mechanism of action could be more beneficial.

The Promise of Proactive Treatment

One of the most frustrating aspects of IBD management is the reactive nature of much of our care. We often wait until symptoms worsen or a colonoscopy shows increased inflammation before making treatment changes. Drug level monitoring could shift this dynamic, allowing for more proactive adjustments before you feel worse or develop complications.

Imagine being able to catch declining drug levels during a routine lab draw, potentially preventing a flare before it significantly impacts your quality of life. This kind of precision medicine approach could mean fewer emergency situations, fewer missed work days, and more predictable management of your condition.

Questions to Discuss with Your Healthcare Team

If you’re currently on ustekinumab or considering it as a treatment option, this research opens up several important conversations to have with your gastroenterologist:

• Is drug level monitoring available at your treatment center, and would your doctor consider incorporating it into your care plan?
• How might your individual factors—such as your weight, metabolism, or concurrent medications—affect your optimal ustekinumab levels?
• If your levels are found to be below the target threshold, what options exist for dose optimization?
• How frequently would drug levels need to be monitored, and would this align with your current lab schedule?

The Broader Context of Precision IBD Care

This ustekinumab research fits into a larger trend toward personalized medicine in IBD care. We’re seeing similar developments across multiple aspects of treatment, from pharmacogenomics (how your genes affect drug metabolism) to biomarker-driven treatment selection. The goal is moving away from the traditional “try this and see what happens” approach toward more targeted, individualized care.

However, it’s important to maintain realistic expectations. Even with drug level monitoring, IBD remains a complex, multifaceted disease. Your symptoms are influenced by numerous factors beyond just medication levels—including stress, diet, sleep, other health conditions, and the natural variability of inflammatory bowel disease itself.

Cost and Access Considerations

As with many advances in IBD care, the practical implementation of drug level monitoring will likely depend on factors like insurance coverage, healthcare system resources, and standardization of testing protocols. Currently, therapeutic drug monitoring isn’t universally available or consistently covered, though this is gradually changing as evidence supports its value.

If you’re interested in exploring drug level monitoring, it’s worth discussing with your healthcare team whether it’s available in your area and what the associated costs might be. Some patients find that even paying out-of-pocket for occasional drug level testing is worthwhile if it leads to better symptom control and fewer flares.

Looking Ahead

While this research provides valuable insights, the authors acknowledge that more work is needed to refine these recommendations for individual patients. Your optimal ustekinumab level might be different from the general 1.1 µg/mL threshold based on your specific disease characteristics, treatment history, and individual response patterns.

Additionally, endoscopic healing—while important—isn’t the only measure of treatment success. Your quality of life, symptom control, ability to work and maintain relationships, and overall well-being are equally crucial outcomes that may not always align perfectly with scope results or drug levels.

The encouraging news is that this research adds another tool to the precision medicine toolkit for IBD care. As these approaches become more refined and accessible, they hold the promise of making your treatment journey more predictable, effective, and tailored to your individual needs.

For those of us who have spent years navigating the uncertainty of IBD treatment, the prospect of more personalized, data-driven care offers genuine hope. While we’re not there yet, each study like this brings us closer to a future where managing Crohn’s disease feels less like guesswork and more like precision medicine.

This research reminds us that the IBD treatment landscape continues to evolve rapidly. Staying informed about these developments, while maintaining open communication with your healthcare team, positions you to take advantage of advances as they become available in clinical practice. Your journey with Crohn’s disease is unique, and increasingly, the treatments available are becoming more capable of matching that individuality.

IBD Movement provides information for educational purposes only. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.