Thyroid Eye Disease Phases

Thyroid Eye Disease should be treated early to prevent further eye damage

Thyroid Eye Disease (TED) is a progressive disease, which means it may get worse over time.

TED has 2 phases, and can be treated in both. The first is called the “acute” phase, which you may also hear your doctor call the “active” phase of TED. The second is called the “chronic” phase, which your doctor may call the “inactive” phase. This does not mean TED has gone away. Since TED is an ongoing autoimmune disease, you may still have symptoms in the chronic phase. When people with TED start to show symptoms again at least 6 months after TED has been in the chronic phase, it is considered a “flare up.” Flare-ups are a normal part of how many autoimmune diseases work.

A TED Eye Specialist can tell you which phase of TED you’re in. Use the diagrams below to learn what happens in each phase of TED.

Find a TED Eye Specialist

Not all doctors are used to treating TED. Find a TED Eye Specialist in your area to make sure you are seeing a doctor who has experience treating it.

What’s happening to the eye in Thyroid Eye Disease?

Diagram of healthy eyeDiagram of healthy eyeDiagram of healthy eye

Healthy eye

  • What’s happening behind the eye?
    • There is no inflammation (swelling) behind the eye
    • The muscle and fat tissue do not press against the eye or on the optic nerve, allowing for normal vision
  • What’s happening in front of the eye?
    • The eyeball and eyelid both appear normal (no redness/swelling)

Diagram of eye during 'acute' Thyroid Eye DiseaseDiagram of eye during 'acute' Thyroid Eye DiseaseDiagram of eye during 'acute' Thyroid Eye Disease

Eye during acute phase

  • What’s happening behind the eye?
    • Muscle and fat tissue become inflamed and swell
    • The swelling makes the eye bulge forward. The swelling can cause double vision and misaligned eyes (eyes that don’t work together), which can make it harder to track words on a page, and can cause problems with depth perception and balance. In some cases, the swelling can even threaten the ability to see
    • Over time, scarring (also known as fibrosis [fahy-broh-sis]) can take place, and cause further damage even after the acute phase is over
  • What’s happening in front of the eye?
    • Symptoms may appear suddenly and get worse quickly. These can include redness, pain, itchy eyes, watery eyes, pressure, eyelid retraction (eyelids that are pulled back), swollen eyes, misaligned eyes (eyes that don’t work together), vision changes, and/or bulging eyes. Your doctor may refer to this bulging as proptosis (prop-toe-sis). Learn more about TED symptoms
  • How long does the acute phase last?
    • 6 months to about 2 years
    • For some people, the acute phase can be shorter or longer
  • Who is it treated by?
    • Ophthalmologists are the primary eye specialists, some of whom treat TED
    • Some ophthalmologists have special training and see more TED patients than others. This includes oculoplastic surgeons, who specialize in fixing the physical damage caused by TED. It also includes neuro-ophthalmologists, who specialize in vision problems caused by damage to nerves around the eyes
    • Endocrinologists will manage Graves’ disease or other thyroid conditions, but do not usually treat TED directly. They will make sure the medicines used to treat Graves’ disease or another thyroid condition do not interact with treatments for TED
    • Not all doctors are used to treating TED. Make sure you’re seeing a doctor with experience treating TED. Find a TED Eye Specialist
  • What are the treatment options?
    • While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA-approved to treat TED. See results

Diagram of eye during 'chronic' Thyroid Eye DiseaseDiagram of eye during 'chronic' Thyroid Eye DiseaseDiagram of eye during 'chronic' Thyroid Eye Disease

Eye during chronic phase

  • What’s happening behind the eye?
    • Scar tissue that began forming during the acute phase continues to cause damage to the eyes
  • Can symptoms still be present during the chronic phase?
    • If left untreated, the scar tissue behind the eye can cause symptoms such as bulging eyes (proptosis [prop-toe-sis]), double vision (diplopia [dih-ploh-pee-uh]), eyelid retraction, eye pain, and pressure
    • Some symptoms, such as redness or swelling, may improve

Remember, TED is an ongoing disease. Just because some symptoms slow down, it does not mean they will go away. It’s even possible for symptoms to return, or “flare up.” If you have symptoms that come back at least 6 months after your TED has been in the chronic phase, it is considered a “flare up.” Approximately 15% of TED patients may have flares. Sometimes these flares are years after early symptoms stopped or lessened.

“I always tell my patients that there’s a possibility of having a flare sometime in the future. It’s just the nature of a chronic, autoimmune disease. When this happens it’s important to talk to your doctor about any next steps.”

— Raymond Douglas, MD, PhD, oculoplastic surgeon, and clinical study investigator of TEPEZZA

  • Who is it treated by?
    • Ophthalmologists with special surgical training
    • These specially trained surgeons are usually oculoplastic surgeons or strabismus surgeons
    • Oculoplastic surgeons specialize in repairing the damage to the eyes and face caused by TED. This includes reducing bulging eyes and repairing retracted eyelids
    • Strabismus surgeons specialize in repairing eyes that have become misaligned or point in different directions

Find a TED Eye Specialist near you.

  • What are the treatment options?
    • While your doctor may prescribe other medicines for your symptoms, only TEPEZZA is FDA approved to treat TED. See results
      • TEPEZZA was tested in 2 clinical studies with people who have Thyroid Eye Disease. All of the people in the studies had some symptoms of TED in its acute phase, including eye bulging, double vision, eye pain, redness, and swelling. No one in the clinical studies had eye surgery.
    • While doctors recommend getting treatment as early as possible in the acute phase, treatment could still help if you are in the chronic phase
    • If permanent damage does occur, surgery, or multiple surgeries, may be needed. Surgery for TED is complex and multiple surgeons may be involved. There are 4 basic types of surgery. These surgeries are often done in a certain order. Not everyone will need all 4:
      1. Orbital decompression surgery: helps reduce bulging eyes
      2. Strabismus surgery: helps correct eyes that aren’t properly aligned or point in different directions, also called strabismus (struh-biz-muhs) and double vision, also called diplopia (dih-ploh-pee-uh)
      3. Eyelid surgery: helps repair eyelid changes, like pulled-back eyelids (also called eyelid retraction)
      4. Facial surgery: helps address other changes to the eyes and face caused by TED

How TEPEZZA may help

The sooner you get treatment, the better your chances of avoiding damage to your eyes. See the difference TEPEZZA can make.

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
  • Fast heartbeat
  • Redness of the face/Feeling hot
  • Difficulty breathing
  • Headache
  • 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 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.

USE

TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease.

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
  • Fast heartbeat
  • Redness of the face/Feeling hot
  • Difficulty breathing
  • Headache
  • 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 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.

USE

TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease.