5 things you should know about thyroid eye disease – CBS Miami


Living with a rare disease can often take days, months, and years of searching for answers. Unfortunately, this is the case with many people living with thyroid eye disease (PDD) – a rare autoimmune disease that can cause double vision, swelling of the eyes, pain and constant irritation that can often be misdiagnosed. for allergies or infection.1 The good news is that there have been recent advances in understanding the disease, as well as a treatment that has given hope to a community that previously had very few options.

Read on for five things you need to know about TED, according to the experts.

1. TED and Graves’ disease are distinct and require different treatments.
PDD is most often seen in people with Graves’ disease, an autoimmune disease that causes hyperthyroidism. In fact, up to half of people with Graves’ disease can develop PDD – but while these are autoimmune conditions and can occur at the same time, they are not the same.2 With Graves’ disease, the most common type of hyperthyroidism, the immune system mistakenly attacks the thyroid. In TED, the immune system attacks the muscle and fatty tissue behind one or both eyes. It is important to know the difference and to make sure to seek a specific treatment for TED.

2. TED management has come a long way.
Until last year, there were no drugs approved by the United States Food and Drug Administration (FDA) to treat PDD. Patients were left with very few options for relief, such as complex surgeries or eye drops. That all changed when the FDA approved TEPEZZA® (teprotumumab-trbw) for adults with PDD.

TEPEZZA is an intravenous medicine, also known as an intravenous medicine, which means that it is given through a needle in your arm under the supervision of a certified healthcare professional. TEPEZZA is given once every three weeks for a total of eight infusions, with a full course lasting approximately five months. TEPEZZA has been shown to reduce swelling of the eyes and double vision, while improving the signs and symptoms of PDD, including eye pain, redness and swelling.3 It is important to note that TEPEZZA treats ASD at the source, not just the symptoms.4

“TEPEZZA has changed the way I deal with TED,” says Lisa Mihora, MD, Oculoplastics, Oculoplastic Eye Surgeons of Phoenix. “Now I have a way to impact inflammation at any point during the illness and improve the symptoms of PDD that are interfering with my patients’ daily lives. “

(Lisa Mihora, MD, Oculoplastic, of Oculoplastic Eye Surgeons of Phoenix)

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, pain. head and dry skin. Please see additional important safety information below.

3. Not all ophthalmologists have experience with PDD.
Because PDD is a rare and complicated condition, not all doctors are familiar with it and do not have the experience of treating and managing it. If you have PDD or are at risk for developing PDD, it is important to see a doctor who specializes in the condition, such as an oculoplastic surgeon or neuro-ophthalmologist, to make sure you are receiving the right care. Make sure they understand the impact of your symptoms on daily activities, such as difficulty driving, working, or leaving home.

For Franka R., a retired teacher from Glendale, Ariz., The search for the right specialist began after her eye doctor said her double vision was caused by a fall and would not last. Instead, it got worse. “In three weeks, I could no longer read my books or the newspaper. I couldn’t go shopping because the items on the shelves were blurry. “

Franka began to search for answers. Her research led her to a diagnosis of Graves’ disease and PDD, and eventually to Dr. Mihora, who worked with her to begin treatment with TEPEZZA.

If PDD is not treated or properly managed, symptoms can persist or worsen and can even lead to vision loss. An early and precise diagnosis is therefore essential. If you have TED or think you may have TED and are not currently working with a TED specialist, visit TEDSpecialist.com to find a doctor near you.

4. The symptoms of TED may slow down, but the disease will not go away.
Although symptoms may slow down or stabilize, PDD is a chronic condition that requires continued management. Most people experience two phases – “acute” and “chronic”.

In the acute phase (your doctor may call this the “active” phase), symptoms may appear suddenly and quickly get worse. Inflammation and scarring can cause eye swelling, double vision, or other symptoms that can affect your appearance and ability to see.

Over time, TED can enter the chronic phase (your doctor may call this the “inactive” phase). Some symptoms, such as redness or swelling, may improve, but others may not go away due to scar tissue in the acute phase. TED specialists recommend starting treatment as early as possible to reduce eye damage and other complications, but treatment in the chronic phase can still be of benefit.

“I tell patients with a diagnosis of PDD that the sooner we start talking and treating eye symptoms, the better,” says Dr. Mihora. “Before, I only saw patients later in the course of their disease, when the scars and eye symptoms were worse. But now we have a treatment that can help sooner.

5. It is essential to defend yourself and find a supportive care team.
It can be difficult to find the right support when living with a chronic condition like PDD, but it’s important to keep looking for the right healthcare team. If you have PDD, it’s important to talk about your symptoms. Advocacy organizations can also provide TED resources and connect you with others who may have faced similar challenges.

After her late diagnosis, Franka accepted help from friends who took her to a PDD specialist; she started to learn everything she could on TED. She has also been active in exploring treatment options, working with her doctor.

“Finding TEPEZZA has radically changed my life. Now that I have completed the treatment, I have resumed activities like reading, shopping and cooking, which were all difficult with my double vision, ”says Franka. “I strongly recommend that other people with PDD do their research, write down their questions, track their symptoms, and speak to their doctor.”

If you live with TED, know that you are not alone and that you can take action. Speak up, seek help, and find a PDD specialist who can work closely with you to manage your condition and determine if TEPEZZA is right for you.

For more information, visit TEPEZZA.com.

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What is the most important information I should know about TEPEZZA?

Infusion reactions may occur during or within 24 hours after your TEPEZZA infusion. If you have a reaction while taking 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 straight away if you get any of these symptoms during or after your treatment with TEPEZZA:

• High blood pressure • Difficulty breathing
• Fast heartbeat • Headache
• Redness of the face / Sensation of heat • Muscle pain

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 cramping and blood in the stool. After each TEPEZZA infusion, tell your doctor immediately if you experience any worsening of the symptoms of IBD.

TEPEZZA can cause your blood sugar levels to rise. Before starting treatment with TEPEZZA, tell your doctor if you are currently being treated for diabetes, if you know your blood sugar is high, or if you have been diagnosed with diabetes. It is important that you take your treatments and that you follow an appropriate diet to control your blood sugar as prescribed by your doctor.

Before receiving TEPEZZA, tell your doctor if you:

  • You suffer from inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
  • You are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.
  • are pregnant or planning to become pregnant. TEPEZZA can harm your unborn baby. Tell your doctor if you become pregnant or think you may be pregnant while taking TEPEZZA.
    • Women who could become pregnant should use an effective form of contraception (contraception) before starting treatment, during treatment and for at least 6 months after the last dose of TEPEZZA.
  • You are breastfeeding or planning to breastfeed. It is not known whether TEPEZZA passes into breast milk. Talk to your doctor about the best ways to feed your baby while taking TEPEZZA.
  • Tell your doctor about all medications you take, including prescription and over-the-counter medications, vitamins, dietary and herbal supplements. Know the medications you are taking. Keep a list to show your doctor and pharmacist when you are given 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, pain. head and dry skin.

This is not a complete list of all possible side effects. Tell your doctor or treatment team if you get any side effect that bothers you or that does not go away.

Please see full prescribing information at TEPEZZA.com.

We encourage you to report negative side effects of prescription drugs to the FDA.

Visit http://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.

The references

[1] TEPEZZA. Thyroid eye disease FAQs. Retrieved from: https://www.tepezza.com/thyroid-eye-disease/frequently-asked-questions. Accessed August 2021.

[2] TEPEZZA. Thyroid eye disease versus Graves disease. Retrieved from: https://www.tepezza.com/thyroid-eye-disease/. Accessed August 2021.

[3] TEPEZZA. How TEPEZZA can help eye disease of the thyroid. Retrieved from: https://www.tepezza.com/about-tepezza/. Accessed August 2021.

[4] TEPEZZA. How does TEPEZZA work. Retrieved from: https://www.tepezza.com/about-tepezza/how-does-tepezza-work-on-thyroid-eye-disease. Accessed August 2021.


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