Thyroid Eye Disease (TED) Awareness Week: How one woman took control with treatment
Posted: November 16, 2020 | Word Count: 1,325
When Patti, a busy 64-year-old mother and grandmother, was diagnosed with thyroid disease in the late 1990s, she figured treating it would be the end of her issues. It took about a year, but Patti’s weakness, fatigue and high heartrate finally subsided and her thyroid levels normalized – she was in the clear, or so she thought.
Four or five years after her thyroid disease diagnosis, Patti started experiencing eye symptoms she’d never had before, like eye bulging, excessive watering, dry eye and an inability to fully shut her eyes while she slept. Patti eventually met with an ophthalmologist who diagnosed her with Thyroid Eye Disease (TED), a rare but vision-threatening autoimmune disease.
In people with TED, the immune system attacks the muscle and fat tissue behind the eye, causing it to become inflamed and swollen. TED most often occurs in people with Graves’ disease or Hashimoto’s hyperthyroidism, but sometimes the symptoms of TED, such as eye pain, redness, double vision, light sensitivity and eye bulging, will be the first reason someone visits their doctor. Until recently, there were no medicines approved by the U.S. Food and Drug Administration for the treatment of TED, leaving many patients to feel helpless.
Over the years, Patti’s eye symptoms worsened, and she bounced from ophthalmologist to ophthalmologist trying to find relief. It wasn’t until she started having double vision that Patti knew it was time to take her TED seriously and consider possible treatment options.
In the summer of 2019, Patti underwent orbital decompression surgery to relieve pressure behind her eyes. After her surgeon left the practice she was being treated at, Patti was referred to Dr. Erik Happ, an ophthalmologist with Allegheny Ophthalmic and Orbital Associates in Pittsburgh. Dr. Happ recommended Patti look into a recent advancement called TEPEZZA (teprotumumab-trbw), the first and only FDA-approved medicine for TED.
“TEPEZZA is changing the way doctors treat Thyroid Eye Disease,” says Happ. “As the first treatment of its kind, TEPEZZA has been shown to reduce eye bulging and double vision and improve the signs and symptoms of TED, including eye pain, redness and swelling. For many patients, just knowing they have a nonsurgical option provides a sense of hope.”
TEPEZZA is an intravenous medicine, also known as an IV medicine – meaning it’s delivered through a needle in a person’s arm under supervision by a medical professional. TEPEZZA is given to patients once every three weeks for a total of eight infusions, with a full course of treatment with TEPEZZA lasting about five months.
After finishing her treatment, Patti is now enjoying comfort in her eyes and a new confidence. “Living with TED is emotionally distressing, and the eye bulging was embarrassing,” she says. “While treatment can seem like a long journey, it was so worth it for me.”
In honor of the first TED Awareness Week beginning November 16, Dr. Happ offers the following tips and information to help TED patients.
Be your own advocate
Identifying and monitoring TED symptoms is key to managing this disease. Without proper care, TED can get worse over time and can lead to blindness in some cases, so it’s important to talk to a TED Specialist about your risk for TED.
When describing symptoms to your doctor, remember to mention how they’re affecting your life, such as causing difficulty driving or spending time outdoors. These details help your doctor understand the full impact of the disease and how to best manage it.
Know your specialists
Before seeking out a doctor, it’s good to know which specialists identify, diagnose and treat TED and how they work together to help you manage the disease. TEDspecialists.com can help patients find a nearby TED Specialist, and also provides helpful information about TED, including symptoms, risk factors and tips for tracking symptoms.
* Endocrinologists specialize in glands and hormones to gauge thyroid activity and help patients manage Graves’ disease and other conditions related to the thyroid.
* Ophthalmologists specialize in eye and vision care and can specifically diagnose TED through an eye exam. However, not all ophthalmologists specialize in TED, so it’s important to seek out an expert who frequently treats and manages TED.
* Oculoplastic surgeons and neuro-ophthalmologists are specialists who typically have extensive experience managing TED. They are best equipped to conduct comprehensive TED exams and promptly treat difficult symptoms. Bringing in these specialists helps endocrinologists and ophthalmologists address immediate needs and facilitate a long-term care plan.
“Every medicine has potential side effects. For TEPEZZA, people who are pregnant should not take TEPEZZA and should tell their doctor if they are pregnant or plan to become pregnant. Patients with diabetes or pre-existing irritable bowel disease should inform their doctor before taking TEPEZZA. Also, as with most medicines that are infused, infusion reactions can occur,” added Happ.
For adult patients who think they may have TED, speak with your doctor and visit TEPEZZA.com for more safety information.
USE and 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:
High blood pressure
Redness of the face/Feeling hot
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, and dry skin.
This is not a complete list of all possible side effects. Tell your doctor or treatment team if you have any side effect that bothers you or that does not go away.
Please visit TEPEZZA.com for more information.
You are encouraged to report negative side effects of prescription drugs to the FDA.
Visit www.fda.gov/safety/medwatch, or call the FDA at 1-800-FDA-1088.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease.