Managing Thyroid Eye Disease (TED): One woman's journey to regain her sight
Posted: April 19, 2022 | Word Count: 1,020
Meet Franka – a 74-year-old retired high school teacher who enjoys volunteering, teaching in her retirement community, and exploring Arizona’s local art scene. But a few years ago, Franka struggled to see the art she loved, as her vision was affected by Thyroid Eye Disease (TED), a rare autoimmune disease.
It all started in 2016 when Franka started losing vision in her left eye, and eventually in her right eye, too. In the days that followed, Franka also began experiencing eye-bulging, an elevated heart rate, and face swelling.
During a visit with her doctor, she described the eye symptoms, but her doctor insisted it was "all in her head." Sadly, her vision continued to deteriorate and eventually, Franka saw everything in orange and could no longer cook or drive.
After finding a new ophthalmologist, Franka was diagnosed with Graves' disease and TED. TED is an autoimmune disease where the immune system attacks the muscle and fat tissue behind the eye, causing eye inflammation and swelling. Up to 50% of people diagnosed with Graves' disease – the most common form of hyperthyroidism that can cause symptoms like Franka’s elevated heart rate – may develop TED.
According to the American Thyroid Association, TED symptoms can include:
- Irritation or grittiness in the eyes
- Redness or inflammation of the white part of the eyeball
- Excessive tearing or dry eyes
- Swelling of the eyelids
- Bulging eyes
- Double vision
- Decreased eye and eyelid movement
- Inability to fully shut eyes
- Optic nerve compression
- Rare or sometimes occurring vision loss
Despite Franka’s struggles, she never gave up on her sight or the hope for treatment.
Franka first discovered TEPEZZA® (teprotumumab-trbw) when she was researching treatment information, but the medication was still in clinical trials. Nevertheless, she read everything she could get her hands on.
Finally in early 2020, Franka became eligible for TEPEZZA, the first and only FDA-approved treatment for TED. TEPEZZA is an intravenous (or IV) medication that is administered to patients once every three weeks for a total of eight infusions over five months.
“I had been looking at it for three years and read all the reports, research papers, and completed my homework,” she said. “I was confident in my decision to pursue treatment with TEPEZZA.”
With an infusion center just 15 minutes from her home, Franka began her infusion journey in April 2020. After completing all eight infusions, Franka’s eye-bulging reduced and she began recognizing other improvements in her TED symptoms.
“I was so happy to have an option that wasn’t surgery to treat my TED at the source.” Today, Franka is on a mission to educate others about TED to help them get a diagnosis and the treatment they need sooner.
"Especially if you have Graves’ disease, you really have to look out for the signs of TED, monitor your symptoms and find a Thyroid Eye Disease Specialist to understand your treatment options," said Franka.
With the improvement in her TED symptoms, Franka is now able to do more of the activities she once loved, and looks and feels more like herself.
For adult patients experiencing TED symptoms, speak with a TED Eye Specialist, such as an oculoplastic surgeon or neuro-ophthalmologist, and visit TEPEZZA.com for more safety information.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about TEPEZZA?
Infusion reactions can happen during or within 24 hours after your infusion of TEPEZZA. If you have a reaction while receiving TEPEZZA, your doctor or nurse will slow or stop your infusion and treat your reaction. If you have a severe infusion reaction, your doctor may stop your treatment completely.
Tell your doctor or nurse right away if you have any of these symptoms during or after your treatment with TEPEZZA:
If you have inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, TEPEZZA may make your IBD symptoms worse. Symptoms of worsening IBD may include: an increased number of loose stools with stomach pain or cramps, and blood in your stools. After each TEPEZZA infusion, tell your doctor right away if you have worsening IBD symptoms.
TEPEZZA may cause an increase in your blood sugar. Before starting treatment with TEPEZZA, tell your doctor if you are currently being treated for diabetes, know your blood sugar is high, or have been diagnosed with diabetes. It is important for you to take your treatments and follow an appropriate diet for glucose control as prescribed by your doctor.
Before receiving TEPEZZA, tell your doctor if you:
- Have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
- Are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.
- Are pregnant or plan to become pregnant. TEPEZZA may harm your unborn baby. Tell your doctor if you become pregnant or suspect you are pregnant during treatment with TEPEZZA.
- Women who are able to become pregnant should use an effective form of birth control (contraception) prior to starting treatment, during treatment and for at least 6 months after the final dose of TEPEZZA.
- Are breastfeeding or plan to breastfeed. It is not known if TEPEZZA passes into your breast milk. Talk to your doctor about the best ways to feed your baby during treatment with TEPEZZA.
- Tell your doctor about all the medicines you take, including prescription and over the counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.
What are the possible side effects of TEPEZZA?
The most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, dry skin and changes in menstruation.
This is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.
You are encouraged to report negative side effects of prescription drugs to the FDA.
Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
Please visit TEPEZZA.com for more information.