Evidence from Long-Duration Studies
If you’ve been living with thyroid eye disease (TED) for a while, you know how relentless it can be. The swelling, the pressure, the way your eyes don’t quite move the way they used to, it doesn’t just affect your vision, but your confidence and quality of life, too.
What’s more, if your TED has settled into a chronic phase, you might be wondering if there’s anything left to try. Can you do anything at all to combat chronic TED symptoms? That’s where treatment with teprotumumab comes in. It’s a promising medication that shows a lot of value.
Can it actually help chronic thyroid eye disease patients? Let’s dig into what the research, especially long-duration studies, has to say.
Understanding Chronic TED
TED starts with an active phase marked by inflammation and rapid changes. Eventually, it settles into a chronic state where the inflammation dies down, but the damage lingers. The swelling might persist, your eye muscles may remain stiff, and double vision or bulging eyes can become long-term issues.
For years, treatment options were limited: steroids, surgery, or just learning to live with the effects. Many people found some relief from those options, but they never really worked the way most people wanted.
Teprotumumab, an FDA-approved biologic therapy, is changing that conversation.
What Is Teprotumumab and How Does It Work?
Teprotumumab is a targeted therapy designed to block the insulin-like growth factor-1 receptor (IGF-1R), which is a main component in TED’s autoimmune attack. By interfering with this signaling pathway, it helps reduce inflammation, swelling, and tissue expansion. Basically, it stops TED from wreaking havoc on your eye area.
Initially, teprotumumab (also known as Tepezza) was studied in patients with active TED, and the results were impressive. But what about those who’ve been dealing with chronic TED for years? Can this drug still make a difference once the active phase has passed?
Can Teprotumumab Work as a Treatment for Chronic Thyroid Eye Disease?
Dr. Raymond Douglas and his colleagues have been at the forefront of researching teprotumumab’s effects on TED (initially active TED, but more recently on chronic TED).
Their recent study, published in the Journal of Endocrinology & Metabolism, takes a close look at how chronic TED patients respond to long-term teprotumumab treatment. Here’s what the data tells us:
Reduction in Proptosis (Eye Bulging)
Even in patients with long-standing TED, teprotumumab significantly reduced eye bulging. This is a major win, as proptosis often requires surgery to correct. Surgery always carries risks, and eye surgery more than most. Orbital decompression for eye bulging without surgery could mean that many patients with chronic thyroid eye disease can avoid painful complications.
Improved Diplopia (Double Vision)
Many patients experienced improvements in double vision, suggesting that even late-stage muscle and tissue damage can be partially reversed. Diplopia is traditionally treated either with corrective lenses designed with special prisms, or, in severe cases, eye surgery. Being able to improve diplopia through medication is a major improvement for severe TED patients.
Sustained Benefits
The improvements with this TED treatment weren’t just short-term, either. Patients using the medication maintained their gains months after completing treatment, which means that the medication likely has a lasting effect on disease progression.
What do these studies mean for patients like you who are dealing with chronic TED?
The Implications for Chronic TED Patients
If you’ve been told there’s nothing left to do for your chronic TED but maintenance, teprotumumab might offer a new path forward. While the drug was initially marketed for active TED, these long-duration studies suggest it can still make a difference even after the inflammation has settled.
That said, teprotumumab isn’t without its risks. Like all medications, it comes with the potential for side effects. Some of the most commonly reported side effects include:
- Muscle cramps
- Nausea
- Hearing changes
- Elevated blood sugar levels
For patients with diabetes or other metabolic conditions, careful monitoring is important.
Is Teprotumumab Right for You?
If you’ve been dealing with chronic TED and are considering teprotumumab, here are some questions to ask your doctor:
How severe is my TED, and am I a good candidate for treatment?
Your doctor should speak with you about any current health conditions you might be dealing with or clinically treating, beyond TED and Graves’ Disease, like diabetes.
What are the risks given my medical history?
In addition to current medical conditions, your doctor will want to review your medical history to check for any additional risks from introducing the medication.
Can I expect improvements in my specific symptoms?
While the medication works well for active and chronic TED patients, outcomes for each patient are unique. Your doctor can help explain what changes you are likely to see with the medication and help you set realistic expectations.
What’s the latest research on long-term outcomes?
Because this is a new medication, the long-term implications are a little unclear. Your doctor can work with you to help lay out what might happen down the road so that you can make an informed decision about your health.
The Outlook for Chronic TED Patients
Chronic TED has long been considered untreatable beyond surgical intervention or basic maintenance. But teprotumumab is challenging that assumption. Thanks to research led by experts like Dr. Douglas, we now know that this therapy isn’t just for newly diagnosed patients. It has the potential to help those who’ve been struggling for years.
If you’re feeling stuck with chronic TED, it might be time to revisit your options. Teprotumumab won’t be right for everyone, but for some, it could be the difference they’ve been waiting for.
However, remember that TED affects everyone differently. The same is true with treatments for the disease. Talk to your doctor, weigh the risks and benefits, and see if this evolving treatment could help you regain control over your vision and your life.
If you’re struggling with chronic TED on your own, contact our office to schedule a consultation.
