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The stories below are from real people with Thyroid Eye Disease (TED) treated with TEPEZZA. Individual results may vary.
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 (TED), no matter if you’ve had TED for months or years.
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.
TEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.
Before receiving TEPEZZA, tell your doctor if you:
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.
“At the end of the eighth infusion, my eye bulging went down significantly, I had no double vision and I couldn’t have been more happy. I was driving okay again. I went out in public, I stopped being such an introvert.”
“With each infusion I did feel more and more relief. Each time the bulging became less. I woke up without having eye pain. The tearing was gone, the redness was gone, the double vision was gone!”
My name is Jeanne. I have Thyroid Eye Disease and this is my real story.
It was early 2019 when I started feeling… I think the word would be anxious. It turned out that I have not just hyperthyroidism, but I have Graves’ disease. I started feeling like my eyes were getting really bad. I saw a primary care physician, I saw an optometrist, I saw an ophthalmologist, I saw a neurologist. I saw a neuro‐ophthalmologist who finally diagnosed me with Thyroid Eye Disease.
My left eye was becoming fixed in my eye socket and it was bulging, and it was itchy and red. Painful. It was a hard time. It was just hard to drive, hard to take walks on the beach. It was hard to go for a hike. It was hard to just be.
A colleague that I’ve worked with for 16 years came over and she’s like, “Jeanne! What happened to your face? I don’t even recognize you!” and it was really disheartening. I knew it because I could barely recognize myself.
Along with my oculoplastic surgeon, I sat down and we made a plan, and that plan was TEPEZZA. And he told me that it was an infusion, that it was going to be 8 infusions over 24 weeks, so once every 3 weeks. 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 to put something new into my body, and I was hopeful that it was gonna work.
It was a slow process, but with each infusion, I did feel more and more relief. It was amazing. It just…each time, my eyes…the bulging became less. I woke up not having eye pain, and I woke up without double vision.
And I kind of raced to the mirror ‘cause I felt my eyes working. The tearing was gone. The redness was gone. The double vision was gone. I was–I called my husband, I’m like, “Jan, you gotta see this!”
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…to not look weird—‘cause you look odd when you have Thyroid Eye Disease—it’s, it’s really nice.
If somebody came to me with, “I think I might have Thyroid Eye Disease,” I first of all would ask them to talk to their doctor. And I would definitely tell them about the option of TEPEZZA.
INDICATION AND IMPORTANT SAFETY INFORMATION
USE
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.
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.
TEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.
Before receiving TEPEZZA, tell your doctor if you:
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.
Join us for an interactive, online event with a TED Eye Specialist and TEPEZZA Patient!
“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.”
“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.”
Watch this video to see how TEPEZZA works behind your eye to treat Thyroid Eye Disease at its source.
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.
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.
TEPEZZA may cause severe hearing problems including hearing loss, which in some cases may be permanent. Tell your doctor if you have any signs or symptoms of hearing problems or changes in hearing.
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.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.
P-TEP-US-00841-3 02/25
