If you suffer from thyroid eye disease (TED), you already know how difficult it can be to live with the condition that comes with a myriad of eye symptoms. Also known as Graves ophthalmopathy, the condition can cause bothersome physical symptoms. It can also affect your physical appearance, which for many people affects their confidence as well. 

TED is a rare autoimmune disease that typically affects people who have Grave’s disease and/or hyperthyroidism. It happens when the body’s own immune system attacks muscle and fat located behind the eye. It’s a rare disease, affecting fewer than 0.1% of people. There is a relatively new treatment for TED that was approved in 2020 called Tepezza. Here, learn what you can expect before and after starting Tepezza. 

Before Starting Tepezza

People with TED face many symptoms of the disease before starting Tepezza. These can include:

• Eye protrusion or bulging (proptosis)
• Eye swelling and inflammation 
• Eyelid retraction
• Red eyes 
• Double vision 
• Misaligned eyes
• Blurry vision 
• Dry eyes 

To be a candidate for Tepezza, you must meet specific criteria. Of course, you must be diagnosed with TED. Additionally, you must have a clinical activity score of 4 or more, which means you have at least four predefined symptoms present. These symptoms include: 

• Spontaneous orbital pain
• Gaze evoked orbital pain
• Eyelid swelling that is considered to be due to active TED
• Eyelid erythema (reddening)
• Conjunctival redness that is considered to be due to active TED
• Chemosis (swelling of the conjunctiva)
• Inflammation of the caruncle (red prominence at the inner corner of the eye) or plica (crescent fold in the medial conjunctive lying lateral to the caruncle)

Additionally, you must have symptomatic moderate to severe disease. You must also meet certain criteria on your thyroid function tests. 

How Does Tepezza Work? 

Tepezza is an insulin-like growth factor that inhibits the IgG1 receptor, although the mechanism of action for treating TED is not yet fully known. 

If you are a candidate for treatment, Tepezza will be delivered to you via an IV infusion. You’ll receive an infusion every three weeks for a total of eight infusions. The entire treatment period takes about five months. One infusion takes about 1.5 to 2.5 hours. 

After Starting Tepezza 

After starting Tepezza, it takes time to see improvement in your TED symptoms. In clinical trials, the drug was found to effectively reduce symptoms in over 70% of patients after six months. Some of the symptoms that people saw improvement in included eye bulging, double vision, pain, redness, and swelling. Some study participants saw improvement in their symptoms in as little as six weeks. 

While Tepezza can improve symptoms in many patients, it is not a cure for the disease, rather it’s merely a treatment that can help manage symptoms. The clinical trial also found that improvement in symptoms can continue even after you discontinue treatment. In some people, results lasted up to one year. 

In addition to only treating the symptoms, Tepezza can also cause side effects, some of which can be severe and can affect your quality of life. Some of the common side effects to watch out for include: 

• Muscle spasms
• Nausea
• Hair loss
• Diarrhea
• Fatigue
• Increased blood sugar
• Hearing impairment
• Altered taste
• Headache
• Dry skin
• Menstrual disorders 

Other serious but less common side effects include infusion reactions, high blood sugar levels, and worsening of inflammatory bowel disease. 

Before beginning any treatment including Tepezza, it’s important to talk to your healthcare provider and make an informed decision on whether the potential benefit of the treatment outweighs the potential risk. When it comes to Tepezza, it’s important to weigh the risk of potential permanent hearing loss. 

Tepezza Hearing Loss

One of the more dangerous and damaging potential side effects after using Tepezza is hearing loss. In the clinical trials, 10% of participants experienced auditory symptoms ranging from ear discomfort to hearing loss. However, in one small study, 65% of patients experienced otologic symptoms. This is a drastic difference from the 10% of people who experienced auditory symptoms in the clinical trial. 

Potential hearing side effects from taking Tepezza include: 

• Hearing loss, which may be permanent 
• Hyperacusis, which causes increased sensitivity to sounds
• Autophony, which causes your own voice to echo in your ear 
• Eustachian tube dysfunction, which causes pressure in your middle ear
• Tinnitus, or ringing in the ear 
• Ear pain
• Ear discomfort, which may feel like your ears are plugged
• Having a sense that your own voice is louder than it is 

Many of these symptoms can be disturbing and even disabling. Because the drug is so new, it’s difficult to determine at this time if hearing loss and other otologic side effects will be permanent. Researchers have not yet been able to study the drug long term. 

Because such a large percentage of people who have taken Tepezza have experienced hearing loss, many are now looking to file a lawsuit against the manufacturer of the drug, claiming that they did not adequately warn people of the potential for this disabling side effect. 

Before starting treatment with Tepezza, it’s important to be aware of and weigh the risks of this potential side effect. 

Tepezza Hearing Loss Lawsuits 

TED is rare, which means the use of Tepezza is also rare. However, hearing loss has been happening so frequently with Tepezza treatment that lawyers are seeking people who believe they have been injured by using Tepezza. Current Tepezza lawsuits have been filed against Horizon Pharmaceuticals, and if you believe you have experienced hearing loss as a result of taking the drug, you may be eligible to file a lawsuit against the manufacturer. Start a Free case evaluation to learn about your compensation eligibility