My Experience with Tepezza: The Good and the Bad

On January 21, 2020, the US Food and Drug Administration (FDA) approved Tepezza, made by Horizon Therapeutics, to treat thyroid eye disease (TED). It is the first and only FDA-approved therapy for TED. It is the only drug that has been shown to treat TED at its source.¹

When TED is in the progressing (or "active") phase, a special switch called a receptor gets turned on. This leads to the swelling of the muscle and fat behind your eyes, causing symptoms like eye bulging, pain, and redness. By blocking the receptor, Tepezza stops the muscle and fat tissue from swelling and reduces symptoms such as bulging eyes, double vision, eye pain, redness, and swelling.¹

Research after approval

Imagine how anxious I was to be approved for this treatment after dealing with distorted and bulging eyes for almost 3 years!? I was worn out, run-down, and feeling hopeless. Yet, I did my homework.

I learned that Tepezza may cause serious side effects, including infusion reactions, worsening of inflammatory bowel disease symptoms, and high blood sugar. I learned that although every patient is different and not all patients will have the side effects, the most common side effects include:¹

• Muscle cramps or spasms
• Hair loss
• Diarrhea
• Feeling tired
• High blood sugar
• Hearing problems
• Taste changes
• Headache
• Dry skin

Even in my vulnerable state of mind, I took the time to weigh the side effects against the gains.

Weighing the side effects of Tepezza

Eight infusions every 3 weeks meant a duration of 5 months. Maybe I would only get a few of the side effects. But even if I got most of them, could I tolerate it for 5 months to get my eyes back? I so badly wanted relief from this miserable eye disease, so I was willing to put up with whatever side effects I would have. My reasoning was, "It's just 5 months out of my life, and the side effects will go away and my eyes will finally feel better." (Nowhere did I read that any of these side effects could be permanent.)

Tepezza infusion reactions: The good and the bad

Some negative side effects, but relief from TED

I found that getting the infusions was actually quite relaxing. Once we knew that my body did not react to the infusion, I could just lay back in the lounge chair and let it do its job. I listened to my audiobooks and wrote overdue letters to friends.

After my first infusion, I was surprised that I felt less pressure behind my eyes. I was excited and encouraged. After the second infusion, my eyes felt even better although nausea snuck up on me, as well as the nightly muscle spasms in my shins. By the third infusion, I began dealing with most of the side effects, but my double vision was gone. Still feeling encouraged, I reasoned that it was worth it. After all, it really was making a positive difference in my eyes.

Mild hearing loss

Then this really weird full feeling in my right ear started happening. It felt like I was underwater. It would come and go for a while until it just hung out constantly with me. I did not equate it with the mild hearing loss that was listed as a possible side effect. Nowhere did I read that my ears would be plugged. The term mild hearing loss is so vague. What does that really mean? Was this from the Tepezza, or is there something else going on with my ears? 

I went to my doctor countless times just for her to tell me there was no fluid in my ears. Little did I know that this full feeling in my ear was the beginning of vestibular damage. Little did I know that it would be permanent. Permanent means I have hearing loss in my right ear, for which I am fitted with a hearing aid. Permanent means I live around chronic tinnitus, which sometimes just hums in the background and other times takes on a high pitch that screams relentlessly. Permanent means I now get vestibular migraines, which cause dizziness and nausea and can last as long as 4 weeks.

Why I want to share my experience with Tepezza for TED

Disclosing my experience is not to cause panic around the Tepezza treatment. I have talked to many patients who have gone through the infusions and had amazing healing in their eyes and experienced no side effects at all! Some patients I talked to had only mild side effects. The most impressive stories patients have shared with me are that not only did their double vision and bulging go away, but after completion of their treatment they needed no surgeries to correct any damage to their eyes. I am sharing my experience with you so you know what to watch for and can get the best outcome from your Tepezza treatment.

A 2021 study looked at hearing loss symptoms in patients who had received at least 4 infusions of Tepezza. The results show that more than half of those patients experienced symptoms including hearing loss, tinnitus, and an ear-plugging sensation or muffled hearing. Based on the results of the study, the researchers suggest that doctors treating patients with Tepezza closely monitor them for hearing loss symptoms. Doctors should also consider performing a baseline hearing test on patients before starting them on Tepezza.²

If the fullness and symptoms of hearing loss start, the infusions can be discontinued. I want everyone to be aware of this side effect. If your ears feel full or heavy or like you have been on an international air flight and can't clear your ears... you could be on your way to permanent vestibular damage and hearing loss.²

For me, this has been another thing to live with because of thyroid eye disease. It is unfortunate and feels unfair. I can not change what has happened to me, but I can help anyone going through the treatment to be aware of it and stay ahead of it. If you feel a change in your ears, let your doctor know right away.

The good and the bad from my experience

At this time, Tepezza is still the only medicine to treat thyroid eye disease at its source, not just the symptoms. I still feel it has been truly amazing and has given hope and relief to so many TED patients. I know that the understanding of TED is ever-evolving and there is ongoing research that reflects the experiences of those living with this debilitating disease. I am hopeful that there will be another treatment in the future with fewer side effects. Tepezza is what we have now. It has helped many TED patients. We just need to be realistic and informed about what the permanent side effects can be.¹

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