You’ve gone through the full course of teprotumumumab, and for a while, it seemed like it was going to make a major difference in your symptoms. The swelling went down, your eyes felt better, and maybe, just maybe, you started to feel like yourself again.
But now, months or even a year later, some of those symptoms are creeping back. What gives? Why do some patients need re-treatment after teprotumumab for thyroid eye disease (TED)?
Let’s take a look at what the latest research on this thyroid eye disease treatment, including work by Dr. Raymond Douglas, has to say.
Understanding How Teprotumumab Works as a Thyroid Eye Disease Treatment
Teprotumumab is a targeted therapy that blocks the insulin-like growth factor-1 receptor (IGF-1R). This receptor is a key player in TED’s autoimmune process.
By stopping this signaling pathway, the drug helps reduce inflammation, swelling, and the fibrotic changes that cause eye bulging and double vision. In many cases, it works remarkably well. The issue is that the positive changes are not always permanent. Some patients will need to repeat thyroid eye disease treatment.
But why is this the case? Shouldn’t the medication work the same way for all patients? To understand the situation, we need to talk about the underlying cause of symptom recurrence in TED patients.
Why Do Some Patients Experience a Recurrence?
While teprotumumab can significantly improve symptoms, it doesn’t cure TED at its root (note: TED is not curable, but it is manageable). TED is an autoimmune disease, and like all autoimmune conditions, it has a mind of its own. One of the notable factors about TED is that it affects each patient slightly differently. The same thing applies to treatments and their results.
Here are some key reasons why symptoms might return, requiring re-treatment:
- Residual Disease Activity: Some patients have underlying disease mechanisms that continue causing problems even after treatment. Think of it like putting out a fire but leaving a few coals still smoldering. Chances are good that, if the conditions are right, the fire will start back up.
- Severity of the Initial Disease: More severe cases of TED may require additional treatment cycles to maintain results. Again, think of the fire analogy. The larger the fire, the longer it takes to put out and the more resources you’ll need.
- Immune System Variability: Every immune system behaves differently, meaning some people experience flare-ups while others remain stable. Each body is unique, and your immune system is what really dictates the results you see, as well as how long those results last.
- Lifestyle and Environmental Factors: Stress, smoking, and even hormonal changes can influence TED’s course. You can control many of those, like quitting smoking or finding ways to deal with high-stress levels. However, not all of these factors are in your control.
As you can see, there are plenty of reasons that people might experience different results after thyroid eye disease treatment. However, new research is shedding light on re-treatment.
What the Research Says About Re-Treatment
A recent study published in Ophthalmology—co-authored by Dr. Raymond Douglas—delves into why some patients require additional treatment after an initial course of teprotumumab. The findings are interesting, and they highlight a few important takeaways:
- A subset of patients saw symptoms return within a year of stopping treatment.
- Re-treatment with teprotumumab showed benefits, often leading to renewed improvement.
- Some patients benefited from alternative therapies or surgical options after an initial response to teprotumumab.
This is a promising thyroid eye disease treatment and only a subset of patients needed re-treatment. A second round of the medication was often enough to provide long-lasting benefits, but alternative therapies and surgeries also have (and will continue to have) roles to play. This really comes back to the nature of TED.
Because it’s an autoimmune disease and affects everyone differently, the results of treatment will be the same. There is not (nor is there likely to be) a one-size-fits-all treatment that works identically for every patient. That’s why it’s so important for patients to work with their doctors and find the right treatment regimen for their needs so they can adjust that regimen as necessary.
What This Means for You
If you’ve noticed TED symptoms creeping back after your first round of treatment, you’re not alone. The good news is that re-treatment is an option, and studies suggest that it can be effective.
However, it’s important to work closely with your doctor to determine whether another round of teprotumumab is the best approach or if other therapies might be more appropriate. Other treatments (including surgery) will always be necessary and exploring all possibilities gives you a wider range of options.
Who Should Consider Re-Treatment?
Not everyone who experiences mild symptoms after treatment will need another full course of teprotumumab. Here are some factors that might indicate re-treatment is a good option:
- You’re experiencing a significant return of eye bulging (proptosis)
- You’ve noticed worsening double vision (diplopia)
- You’re experiencing persistent inflammation despite initial improvement
- You’re dealing with functional impairments affecting daily life
If those sound familiar, talk to your doctor about re-treatment.
Exploring Alternatives
Re-treatment with teprotumumab is one path forward, but it’s not the only one. Depending on your case, your doctor might suggest:
- Orbital decompression surgery if eye bulging is severe and persistent.
- Strabismus surgery for long-standing double vision.
- Lifestyle changes like quitting smoking and managing stress to reduce the risk of recurrence.
Deciding What’s Right for You
TED is a complex disease, and while teprotumumab is a powerful tool, it’s not always a one-and-done solution. Re-treatment might be required. If your symptoms have returned, don’t lose hope.
Research (including studies led by Dr. Douglas) is shedding light on why this happens and how re-treatment can help. The key is staying proactive, staying in communication with your doctor, and exploring all available options to keep your eyes—and your quality of life—in the best possible shape.
