Persistence and self-advocacy: A journey to find treatment for Thyroid Eye Disease (TED)
(BPT) - Raquel, an avid traveler and baker who works in investing, didn’t think her eyes looked different until she started noticing them in pictures. She enjoyed posting pictures on social media, but eventually, she couldn’t stop seeing her eyes, and only her eyes, in photos. They always looked bloodshot and different. At first, she assumed the redness and dryness she was experiencing were signs of dry eyes or allergies, but eventually, her eyes started protruding.
Raquel kept dismissing her symptoms, often using eye drops to relieve the dryness and redness and wearing sunglasses to cover her eyes. “I looked great with sunglasses, but head-on, my eyes looked weird."
After seeing several doctors, Raquel was finally diagnosed with Thyroid Eye Disease (TED) — a rare, autoimmune condition that may affect up to 50% of people with Graves’ disease, a separate autoimmune condition that affects the thyroid. Symptoms of TED can vary greatly and may include dryness and grittiness, redness and watering, eye pain and pressure behind the eyes, bulging or misaligned eyes, sensitivity to light, and double or blurry vision. If left untreated, TED can potentially lead to vision loss.
As her TED progressed, Raquel stopped posting pictures of herself and started searching for answers on social media. “I started looking up hashtags like ‘bulgy eyes.’ I saw so many photos of people whose eyes looked like mine and knew I needed to find help.”
Today, Raquel has relief from her TED symptoms, but it wasn’t without persistence and the treatment option TEPEZZA® (teprotumumab-trbw) — the first and only FDA-approved medicine to treat TED symptoms at the source. To help others find the care they need sooner, Raquel is sharing what she learned along the way.
See Important Safety Information for TEPEZZA below.
Be Your Own Best Advocate
While looking for a doctor to help her, Raquel said she felt “helpless and that there was nothing that I could do to feel that I was in control.”
To prevent this from happening to others, Raquel recommends the following:
- Find a TED Eye Specialist, like a neuro-ophthalmologist or oculoplastic surgeon, who is specially trained to manage and treat TED. These specialists perform eye exams, evaluate and note how TED may change over time, and can get you started on TED treatment.
- Speak up about all new or worsening symptoms, even the more invisible symptoms such as blurry vision, double vision, or pain.
- Don’t downplay the impact these symptoms have on your day-to-day life. If you are not looking like yourself or feeling like yourself, tell your doctor. When your doctors know how TED is affecting you, they can help you get the treatment you need for some symptoms.
- If you have photos of yourself, bring them to your appointment and show your doctor how your appearance may be changing over time.
Ask about Treatment Options
Raquel was relieved when she learned treatment for TED was available and she was prescribed TEPEZZA by her neuro-ophthalmologist.
TEPEZZA is an intravenous medicine, also known as an IV medicine, meaning it is delivered in a person’s arm under the supervision of 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 taking about five months.
With each infusion, Raquel started feeling better and noticed the pain, pressure, and bulging in her eyes subsiding. She also started to notice that her eyes were looking better, and she felt more like herself.
“During and after TEPEZZA treatment, my TED symptoms started to lessen, and I began to feel and look more like myself again. Now, I feel comfortable taking photos without sunglasses again,” said Raquel.
Raquel doesn’t want others going through what she went through and encourages those living with TED or symptoms of TED to speak up and ask a TED Eye Specialist about available treatment options, including TEPEZZA.
“TED has made me realize how important it is to be persistent and to find the right doctors. I encourage everyone to be proactive with their health and to advocate for themselves,” said Raquel.
Visit TEPEZZA.com to learn more and find a TED Eye Specialist near you.
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, weight loss, nail problems, 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.
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