TEPEZZA Stories from Real Patients

Hear from people who have taken TEPEZZA

The stories below are from real people with Thyroid Eye Disease (TED) treated with TEPEZZA. Individual results may vary.

Watch Randi’s story

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Karen Video Thumbnail
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Karen: Hi, my name is Karen. This is my story.

At first, my eyes started watering really bad and they started swelling. When that happened, it was very scary. You wake up one morning and your eyes are swollen, they’re red, and it continues to get worse, there’s no relief no matter what you do for yourself, there’s no relief. So of course you have to go seek medical attention and at this time you’re pretty much in a desperate state because you’re experiencing double vision. Double vision of course impedes your daily life. You can’t drive, you can’t read, you can’t walk. That went on for a period of time and then the protrusions started within my right eye.

I went to my eye doctor and I was referred to a specialist. After I went to go see the specialist for my first time, she ran tests on me and explained to me that I had Thyroid Eye Disease.

They found a drug that might help. I was very scared at the beginning. I was very intimidated by needles, but I knew that this was the course of action I had to take to help me get better. To avoid everything else that was on the road for me, such as the steroids and the surgery, the infusions didn’t sound so bad and I’ll be honest with you, my first encounter with the infusion center, I was very nervous when I initially got there. For me, it wasn’t such a bad experience and then three weeks later I went back for the second and it was the same thing and at that point in time, you’re there for a couple of hours so you’re starting to talk to the people there. They become your family there. They would make me very comfortable. I didn't even think of it as, "Oh my gosh, I'm sitting here getting an infusion. This is terrible." I thought, "Hey, you know, this isn't bad."

They started testing my eyes and they were showing improvement. I went back after the third infusion and I went back to the doctor to get tested and my eyes had receded 2 millimeters. The redness was going away, the swelling was going down, my eye was receding, the double vision went away. I finished out the rest of my infusions, which was a series of 8 and at the end of the eighth one, my eye had receded 5 millimeters, I had no double vision and I couldn’t have been more than happy or pleased and I felt so grateful and so blessed that I had been able to receive this.

I was driving okay again. At work, I had no problems at work. I didn’t have to have the lights off in the office anymore because I was so light-sensitive that I worked in the dark with only the computer screen. I went out in public. I didn’t have to wear sunglasses every time I was going somewhere because I wore them even if it was raining outside. So, I stopped being such an introvert.

My journey with this is a very painful one, but the ending is great, the ending is beautiful. And I have a life, I have a good life.

At this point in time now, they have a drug that’s available.

My name is Karen and TEPEZZA worked for me.

INDICATION AND IMPORTANT SAFETY INFORMATION

USE

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:

  • 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, 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.

Watch Karen’s story

Read transcript

Jeanne: So I went to my doctor and he told me about TEPEZZA. He told me that it was an infusion, that it was going to be eight infusions over 24 weeks, so once every three weeks. He explained that it's about a two-hour infusion the first time, and the next, subsequent infusions would be about an hour.

I'm a nurse, I do infusions all the time. So I didn't really think it was a big deal, but it was a little scary that I was going put something new into my body. And I was hopeful that it was going to work. So I was elated, I was elated when I got the call that I was going to be able to get TEPEZZA.

The surprise was actually how easy it was to get infused. I think that some people may have an issue, but the nurse started up the infusion and I didn't feel a thing. It was very comfortable, I was sitting in an infusion chair, very private, very comfortable. It was start an IV, get the infusion going, and you're out of the office. It was fabulous. I didn't schedule myself for work that night, and I didn't schedule myself for work the night after because I was thinking, "Okay, I don't know how this is going to go. I don't know if I'm going to have any side effects. Let's see how this works."

And every infusion I had, there was a little improvement with each subsequent infusion. I just found that my eyes were regressing: They weren't as proptotic as they were when I first started. My eyelids became kind of a normal-looking eyelid. I could feel the mobility of my eyes in the eye socket. I could feel less pressure from behind my eyes. They felt lighter. They felt free. And it just felt better and better with each subsequent infusion. It was the best feeling.

It's a hard diagnosis to have, it's hard to live with and to not have the heaviness behind your eyes, to not have the pain behind your eyes, to not have the itchiness, the bulgy red eyes. If I could sum up the entire infusion process in one word or phrase, I think I would say, "Illuminating, it was very illuminating."

INDICATION AND IMPORTANT SAFETY INFORMATION

USE

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:

  • 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, 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.

Watch Jeanne’s story

Questions about TED or TEPEZZA?

Join us for an interactive, online event with a TED Eye Specialist and TEPEZZA Patient!

Photo of TEPEZZA patient Judy B Photo of TEPEZZA patient Judy B

Judy B.

Photo of TEPEZZA patient Judy B

Before TEPEZZA

“I started experiencing visual problems which affected my daily life. I slowly stopped reading because I couldn’t track the words on the page. Eventually, I stopped driving, relying on others for transportation.

My eyes were protruding more and more each day. I felt freakish. In public, I felt like people were staring at me. I avoided having my picture taken as much as possible. I also avoided people I didn’t know, and I would look away or down at the floor.”


Photo of TEPEZZA patient Wendy L Photo of TEPEZZA patient Wendy L

Wendy L.

Photo of TEPEZZA patient Wendy L

Before TEPEZZA

“I started having problems completing everyday activities. Driving also became difficult. I drove with one eye closed due to severe double vision. I quit driving long distances and anywhere I was not familiar.

I was told that I looked ‘bug-eyed’ and ‘tired.’ I became so self-conscious that I did not want to meet new people.”

See how TEPEZZA works

Watch this video to see how TEPEZZA works behind your eye to treat Thyroid Eye Disease at its source.

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, 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.

USE

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

P-TEP-US-00841 12/22

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, 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.

USE

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

P-TEP-US-00841 12/22