Approved Use: TEPEZZA is for adults with Thyroid Eye Disease (TED), no matter if they've had TED for months or years.
For US Residents Only
For US Residents Only
The stories below are from real people with TED treated with TEPEZZA who have been compensated for their time. Individual results may vary.
Kim: I’m Kim, and this is my journey with Thyroid Eye Disease.
When I was 17, I started to get really tired, and my mom was worried about me, so she took me to the doctor to have me checked for Mono.
And the doctor did the blood work and said, you do not have Mono. I think it’s just growing pains and kind of just sent me on my way.
And then I went to college where I was recruited to play volleyball and run track. When I went to the volleyball camp before the season,
the coach called me into the office and she looked at me and she said, “You play like you’re sick,
I’m cutting you.” And I was devastated.
So, I went to a doctor on campus and he basically told me I was a hypochondriac.
My uncle is an ophthalmologist and he looked at me and said, “Oh my gosh, you are so sick.” My uncle got me into an endocrinologist, and he said, “You have Graves’ disease, and you need treatments immediately.”
So, I started radiation treatments. Once that was stabilized, my eye symptoms started to get worse.
And my uncle at that time said, “You have Thyroid Eye Disease and it is independent from your Grave’s disease.”
I had the tightness in my eyes. The bulging. And they kept getting worse and worse as time was going on. My eyelids wouldn’t close. So, they got me into an ocular plastic surgeon and I had my first Levator surgery.
That took care of the major symptoms. I could drive during the day, but nighttime no, everything, all the lights were double. You just kind of learn to live with those symptoms and move on because you think there’s nothing you can do anymore.
So, I thought this is just how it was going to be. You just aren’t comfortable anymore with yourself in your own skin and everything bothers you.
It got to a point where I didn’t want to be out in public because people would look at me and I knew they were looking at my eyes.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease or TED, no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
After 25 years and four surgeries, my optometrist recommended
that I see an oculoplastic surgeon, and the new oculoplastic surgeon said, “Hey, there’s this new medicine out called TEPEZZA. I think before we do any more surgeries on you, you should try it.”
I had told her I saw the commercials, and I said I didn’t think it was an option for me
because I thought I had to be in that bad phase with all those bad symptoms I had before.
And she said, “No, I’m pretty sure this is going to be it.”
When I went for my first infusion, I was very anxious.
Then after the second treatment, I got used to everything. And then after the fourth treatment,
I noticed the bulging had decreased. It was exciting to, to see that.
The most significant difference was infusions five through eight. The tightness was gone. When I was done, my eye bulging, decreased three millimeters in each eye, which is a significant difference.
To see myself now, after this treatment, it’s been uplifting because I don’t think about my eyes every day anymore.
I can go about my day being confident and people aren’t asking me about my eyes.
When my son got married, I actually couldn’t wait to see the pictures.
And you see a picture. You don’t see eyes. It’s been an amazing experience. If I can help somebody who was in the same stage as I was and thinks they can’t do this,
they should make sure they ask their doctor, “is this an option for me?” Because I didn’t think it was and it’s been incredible.
Talk to your doctor to see if TEPEZZA might be right for you.
My name is Randi, and I’m here to talk about my journey with thyroid eye disease.
That started in March of 2020. I was sitting in the living room with my mother and all of a sudden there was two of her.
When I saw that it wasn’t getting better, I called my ophthalmologist right away, and my ophthalmologist knew the minute he saw me that it was something serious.
He picked up a hand mirror and he handed it to me and I held the mirror up to my face and went, Oh, my God, when did this happen?
And he said, I think I suspect that your thyroid is involved in this and that you may have thyroid eye disease, but I need to run some tests. I was actually diagnosed with thyroid eye disease first, and then I was diagnosed with Graves Disease.
Three weeks later, it was explained to me pretty quickly that it’s two separate diseases and that although there is some connection between the two, that they had to be treated separately.
I didn’t allow myself to be photographed or be in a Zoom meeting for over a year.
I couldn’t read contracts. When that double vision came on, I couldn’t looking at my computer screen, doing anything that I would do during a typical real estate day, including driving those things were no longer things that I could do.
So my son offered to get his license and come work with me and help me out through that. If it hadn’t been for that, I would have had to close my practice down for sure.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease or TED, no matter if you’ve had TED for months or years. TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain. Please stay tuned for additional Important Safety Information later in this video.
My endocrinologist started. They started treating me to try to get my thyroid under control. And my eye doctor told me about TEPEZZA.
He had just heard about a new medication that had just been FDA approved. He had his office coordinate with the insurance company.
He was the one that had told me about TEPEZZA. And so I think this is something that could really help you.
And it took some time, but he handled everything. I was approved maybe four months later, and they assigned me a patient access liaison who was able to walk me through the process and also tell me some of what to expect if I was gonna go down this path with TEPEZZA.
Because, you know, it’s a huge unknown and you’re making medical decisions for yourself and trying to have all the information you can. So she was really helpful in that process. I felt like she was there with me, just kind of holding my hand a little bit.
Randi’s Experience with Side Effects
Sometimes people are nervous about getting an infusion. I was nervous.
But I also have read all the information. I mean I grabbed the bull by the horns on that. It’s just the way that particular medicine works. The side effects were a little different with every single infusion that I had. So, my skin did get really dry. One of my infusions also, I had rapid twitches in my eyes and then that went away like after three or four days.
Being fatigued the next day was caused for all eight of them. I would just be tired, not feeling sick, but just tired. Like I want to sleep more than usual. So I would take the day off after the infusion and would do just that. I would just make it a rest day.
I had lost the hair on my arms and on my legs. I did notice I got a little cramping in my legs. That sort of went on for the longest. But it’s been a year since my last infusion this month and I haven’t had any other cramping for a long time.
After the last infusion, the double vision was gone.
The process of your your eyes going back into place and all of that simmering down doesn’t just happen overnight.
I’d say that was closer to my seventh infusion and I’d gone back to my eye doctor again. He was checking me regularly around that point and we looked in that mirror again and I just remember..
...just remember just kind of thinking, Oh, there you are. I know that girl. And I knew then, like, I have one more infusion to go
My symptoms have never come back after the last infusion.
I completed all eight infusions and the symptoms have never returned. I know that I will have thyroid eye disease forever, but it’s not something that I have to think about and carry around with me every day.
Now I’m part of the TED team, which is a peer-to-peer network of thyroid eye disease patients.
The reason that I do tell my story and the reason I do go there is because I know that that story helps other people.
And I know when I talk to them and listen to them on the phone, I hear the relief in their voices from being able to just communicate with another person that has the same disease. And I see what that does for them, and that’s why I do talk about it.
Talk to your doctor about TEPEZZA.
Lily: Oh, so close
Interviewer: Hi, Lily.
Lily: Hi!
Interviewer: I love that we're catching up with you on the pickleball court.
Lily: I know. I'm very excited. It's really fun.
I play tennis. I picked it up during COVID, so this is a lot easier to get the hang of.
Interviewer: So, what other things do you like to do when you're not playing tennis or you know pickleball?
Lily: Yeah so, I also picked up Pilates recently, so that's really fun. I feel like it's a good low impact way you work out. But also hiking, cooking, and I also recently picked up skiing this year too, so I'm excited when skiing season starts in a few months to go down the slopes.
Interviewer: So you’re active; you do a lot of stuff.
Lily: Yeah. I think that's why, like when I was diagnosed, it was like really hard to stay active in the same ways that I did before.
Interviewer: Well Lily, how would you describe yourself to somebody who doesn’t know you?
Lily: Good question. I think I'm very lively, but I don't think you can see that when you first meet me. I think I'm definitely very calm and, just calm and kind I think, and positive.
Interviewer: I can see that because everything you say is said through a smile, so I think that checks out.
Lily: Yes, I think I need to stop smiling as much.
Interviewer: I disagree, I don't think anybody can ever say they should smile less.
Lily: Okay, okay. I'll take that.
Interviewer: How long have you been living with symptoms of Thyroid Eye Disease? When did it all start?
Lily: Around, like, July 2021. I remember it was around the 4th of July, and I noticed, like, one of my eyes looked lopsided.
And it was like bulging.
And it was uncomfortable.
Interviewer: How long did it take when you started experiencing symptoms to when you were diagnosed?
Lily: It was really fast. I was like so scared. I was like, “Oh my gosh, what is wrong with me? I need to go to a doctor.” So, I went to the doctor and it only took about a month or so before I was referred to my endocrinologist and she diagnosed me with like Graves’ disease, and Thyroid Eye Disease.
Interviewer: How did your symptoms impact your ability to do those things you love to do?
Lily: So that part was really tough, just like the vision and being comfortable.
You don’t have as good a reflexes.
Interviewer: Yeah, I can imagine.
So, at what point then, you know, as this is impacting your everyday life and you’re you know, you’re dealing with all of this, you’ve been diagnosed. When did doctors mention to you that there was treatment that could help?
Lily: My endocrinologist is awesome. She like mentioned it in the very first like consultation that I had, appointment with her.
She was like, “There’s this new drug, it’s TEPEZZA. It’s FDA approved and you seem like the perfect candidate for this.” So, I like knew at the outset like this was the option.
Voiceover: TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
Interviewer: Did you have any concerns about going in? Did your endocrinologist share possible side effects of treatment?
Lily: Yeah, I think I had like a few concerns, obviously, because I’ve never had an IV infusion, like it would obviously be something new. But the other symptoms, she was like very upfront with what was possible in terms of side effects. And after looking at them, the side effects I was having from Thyroid Eye Disease were having a bigger impact on my life, and it was something that I was willing to go through with in order to feel better.
Interviewer: What kind of side effects did your endocrinologist tell you were possible?
Lily: She told me about high blood sugar, fatigue, muscle cramps, like hearing loss.
The basic ones that you see when you go to the TEPEZZA website. And I wasn’t too scared off by it. And I did my due diligence, looking into like what I was comfortable with and weighing the possibilities of like my own situation. And for me it was worth it.
Interviewer: Over the course of treatment, did you experience any side effects?
Lily: I did.
I had muscle cramps in my legs and I remember the first time it happened, I thought it was because I went to hike the other day and I was like very sore and my leg was cramping. I was like, “Man, I am really out of shape from this hike, it wasn’t even that long.”
But then I realized, “Oh, like, this is actually one of the symptoms that my doctor told me about, and it’s happening to me.” So, I connected like two and two together and realized, “Okay, this is what’s happening.”
I would have to like massage it, I would like wake up in the night from the pain. But that’s only happened maybe like once every infusion or so.
And then I also had some, like hearing changes. I had some like ringing in my ears. And then when I told my oculoplastic surgeon, he referred me to an audiologist to get a hearing test. And hearing test wise, like everything was fine and the ringing eventually ended after I stopped my infusion.
Interviewer: Was there ever a point where any of these symptoms made you question your decision to take TEPEZZA?
Lily: No, there wasn’t a point in the treatment where I was like, I should stop this treatment because after like the second or third one, I started seeing improvements like very steadily. Where your eyes are,like how they feel and things like that, it was worth it.
Interviewer: As you ended up going through all eight treatments, when did you notice the biggest change?
Lily: I think after the fifth or sixth one, I feel like you can see a dramatic change in my, like, pictures from before and pictures now. I saw like a significant change. I was like, “This is really working. Like, okay, I just need to get through a few more.”
Seeing the results and like going back and seeing your like before, after pictures is like worth all the effort I was like, “Okay, wait. I kind of look like myself again.” I was like, “Wait, this is how I’m supposed to look like.” So, all the people who met me I’m like, “Okay, now you know me.”
I was like “Okay, I’m very proud of myself. Like getting myself through all that and like, that’s something I want to share with other people.”
It feels like all the hard work is like finally paying off.
Interviewer: When was it that you noticed that your side effects were starting to improve?
Lily: Yeah, so, I had them up like till my eighth infusion. And then once it finished, I gradually started noticing them like disappear.
Once I stopped infusion, I didn’t have any more like cramps, Like that wasn’t a thing at all.
But the longest lasting one was the hearing changes.
After a few months, okay, that slowly started going away. So, it was not permanent for me.
Interviewer: When all was said and done and you've got your eight infusions and now the side effects have improved, your symptoms from TED have improved, what was that day like? After your eight infusion was done, did you celebrate in some way?
Lily: Okay, I got a cake and I was like, Okay, I'm going to celebrate myself and eat the cake. Right. And so I actually took a Polaroid like of the day when I finished the infusion. I have my cake to celebrate, but it was like, really, like, freeing to feel like, Okay, like I'm done; Especially since I don't like needles.
So, every time I would get an infusion, it was like, very nerve-racking for me. Like my hands would sweat so, like no more needles, no more infusions, like no more treatments, and I’m getting better. So, it’s like very celebratory.
Thinking of all that you’ve done that whole six months of like getting the medicine was like, “Wow, if I can get through the six months of my life, I can get through like, any six months of my life.”
Interviewer: You share this story with a smile because you come out on the other side of this feeling better. But, what did you learn about yourself over the course of experiencing these symptoms and going through treatment to where you are today?
Lily: I think one thing there’s a lot more to smile about.
I think I learned like I am a lot stronger than I thought I was, and a lot more capable of doing things that I don’t know how to do, like navigating insurance or like trying to figure out what’s happening with the infusion center.
Like, “If I can do this, then like I can do anything” type thing.
Interviewer: I feel like I'm ready to take you on a pickleball. Are you willing to go challenge me out there?
Lily: Yes. Let's go.
Interviewer: Let’s go. Let’s go do it. Okay, I'll follow you.
Lily: awesome.
Interviewer: That’s great. Thank you so much for doing this.
Lily: No, thank you.
My name is Pam, and this is the true story of my struggle with thyroid eye disease.
Back in 2021, I went to my primary care physician because I’d had multiple symptoms that I just didn’t understand. I was really, really shaky, nervous.
Went to the primary care physician, and he told me,
Your numbers are off the charts after doing some bloodwork. And this is the worst case of hypothyroidism, I’ve ever seen.
And then it was a few months after that, that I noticed changes in my eyes.
It literally felt like something was in there pushing my eyeballs out.
I wore sunglasses outdoors and indoors to hide from the public because I didn’t want them to see what my eyes looked like.
I gradually started to see my eyes begin to look like they were pushing out from my face.
The warm compresses didn’t help. Eyedrops didn’t help. Nothing was helping me.
I wasn’t able to read license plate numbers.
They just blurred out to the point where the numbers looked like they were stacked on top of each other.
It was scary.
It was especially scary when the ophthalmologist told me, “look, I really think this is thyroid eye disease now, and it is progressing to the point where I want you to have an emergency appointment with the ophthalmic plastic surgeon.”
So I went to see the ophthalmic plastic surgeon.
He’s like “You do have TED.”
And then we can make a decision on whether TEPEZZA might be right for you.
TEPEZZA (teprotumumab-trbw) is a prescription medicine used to treat Thyroid Eye Disease or TED, no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
When the ocular plastic surgeon prescribed TEPEZZA, I could not have been more happy because I finally could get to a point where I was looking forward to seeing something positive with what was going on with my eyes, instead of something negative.
I was made aware that TEPEZZA was an infused drug and that you would take eight treatments over the course of several months.
Before I started treatment with TEPEZZA, I read about the side effects that were possible with treatment and mine I would have to say were manageable.
I did experience some nausea.
But after treatment 7 and 8 things had started to improve for me and I was happy. I knew that something good was happening.
My eyes didn’t look like they were popping out.
It was an amazing feeling.
After treatment, I think not only do I start to look more normal on the outside, I think I start to feel more normal on the inside because of that. And it’s an incredible feeling.
Thyroid eye disease is something that can take a lot away, but there’s an option there. Talk to your doctor, ask lots of questions, and be your own advocate.
When I look in the mirror. I see a fighter.
I see someone who perseveres, who never gives up.
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:
TEPEZZA may worsen inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, even if you don’t have a diagnosis of IBD before starting TEPEZZA treatment. Tell your doctor right away if you have worsening IBD symptoms, which may include diarrhea with stomach pain or cramps, blood in your stools, sudden urgency to have a bowel movement, or feeling like you need to have a bowel movement even when there’s little or no stool to pass.
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, ear discomfort, 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 see Full Prescribing Information or visit TEPEZZA.com for more information.
Talk to your doctor to see if TEPEZZA could be right for you.
Karen: You wake up one morning, and you experience double vision. So, of course, you have to go seek medical attention. And at this time, you’re pretty much in a desperate state because you experience double vision. Double vision of course, impedes your daily life.
You can’t drive. You can’t read. You can’t walk. And that went on for a period of time, and then the protrusion 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 that I had to take to help me get better.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
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. 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. And 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 two millimeters.
My eye was receding; the double vision went away. Then I finished out the rest of my infusions which there was a series of eight. And at the end of the eighth one my eye had receded five 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. 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.
My journey with this, it’s a very painful one, but the ending is great.
My name is Karen, and TEPEZZA worked for me.
Talk to your doctor about TEPEZZA.
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 had double vision. I had a hard time seeing the perception of things, so driving became a real problem.
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.
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.
A colleague that I’ve worked with for 16 years came over and she’s like, “Jeanne! 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.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years. TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain. Please stay tuned for additional safety information later in this video.
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 going to work.
It was a slow process, but the bulging became less.
After my last infusion, I woke up without double vision. And I kind of raced to the mirror because I felt my eyes working.
The double vision was gone. I was–I called my husband, I’m like, “Jan, you got to see this!”
It’s a hard diagnosis to have, it’s hard to live with. And to not have the heaviness behind your eyes…
the bulgy eyes …
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.
Kim: I’m Kim, and this is my journey with Thyroid Eye Disease.
When I was 17, I started to get really tired, and my mom was worried about me, so she took me to the doctor to have me checked for Mono.
And the doctor did the blood work and said, you do not have Mono. I think it’s just growing pains and kind of just sent me on my way.
And then I went to college where I was recruited to play volleyball and run track. When I went to the volleyball camp before the season,
the coach called me into the office and she looked at me and she said, “You play like you’re sick,
I’m cutting you.” And I was devastated.
So, I went to a doctor on campus and he basically told me I was a hypochondriac.
My uncle is an ophthalmologist and he looked at me and said, “Oh my gosh, you are so sick.” My uncle got me into an endocrinologist, and he said, “You have Graves’ disease, and you need treatments immediately.”
So, I started radiation treatments. Once that was stabilized, my eye symptoms started to get worse.
And my uncle at that time said, “You have Thyroid Eye Disease and it is independent from your Grave’s disease.”
I had the tightness in my eyes. The bulging. And they kept getting worse and worse as time was going on. My eyelids wouldn’t close. So, they got me into an ocular plastic surgeon and I had my first Levator surgery.
That took care of the major symptoms. I could drive during the day, but nighttime no, everything, all the lights were double. You just kind of learn to live with those symptoms and move on because you think there’s nothing you can do anymore.
So, I thought this is just how it was going to be. You just aren’t comfortable anymore with yourself in your own skin and everything bothers you.
It got to a point where I didn’t want to be out in public because people would look at me and I knew they were looking at my eyes.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease or TED, no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
After 25 years and four surgeries, my optometrist recommended
that I see an oculoplastic surgeon, and the new oculoplastic surgeon said, “Hey, there’s this new medicine out called TEPEZZA. I think before we do any more surgeries on you, you should try it.”
I had told her I saw the commercials, and I said I didn’t think it was an option for me
because I thought I had to be in that bad phase with all those bad symptoms I had before.
And she said, “No, I’m pretty sure this is going to be it.”
When I went for my first infusion, I was very anxious.
Then after the second treatment, I got used to everything. And then after the fourth treatment,
I noticed the bulging had decreased. It was exciting to, to see that.
The most significant difference was infusions five through eight. The tightness was gone. When I was done, my eye bulging, decreased three millimeters in each eye, which is a significant difference.
To see myself now, after this treatment, it’s been uplifting because I don’t think about my eyes every day anymore.
I can go about my day being confident and people aren’t asking me about my eyes.
When my son got married, I actually couldn’t wait to see the pictures.
And you see a picture. You don’t see eyes. It’s been an amazing experience. If I can help somebody who was in the same stage as I was and thinks they can’t do this,
they should make sure they ask their doctor, “is this an option for me?” Because I didn’t think it was and it’s been incredible.
Talk to your doctor to see if TEPEZZA might be right for you.
My name is Randi, and I’m here to talk about my journey with thyroid eye disease.
That started in March of 2020. I was sitting in the living room with my mother and all of a sudden there was two of her.
When I saw that it wasn’t getting better, I called my ophthalmologist right away, and my ophthalmologist knew the minute he saw me that it was something serious.
He picked up a hand mirror and he handed it to me and I held the mirror up to my face and went, Oh, my God, when did this happen?
And he said, I think I suspect that your thyroid is involved in this and that you may have thyroid eye disease, but I need to run some tests. I was actually diagnosed with thyroid eye disease first, and then I was diagnosed with Graves Disease.
Three weeks later, it was explained to me pretty quickly that it’s two separate diseases and that although there is some connection between the two, that they had to be treated separately.
I didn’t allow myself to be photographed or be in a Zoom meeting for over a year.
I couldn’t read contracts. When that double vision came on, I couldn’t looking at my computer screen, doing anything that I would do during a typical real estate day, including driving those things were no longer things that I could do.
So my son offered to get his license and come work with me and help me out through that. If it hadn’t been for that, I would have had to close my practice down for sure.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease or TED, no matter if you’ve had TED for months or years. TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain. Please stay tuned for additional Important Safety Information later in this video.
My endocrinologist started. They started treating me to try to get my thyroid under control. And my eye doctor told me about TEPEZZA.
He had just heard about a new medication that had just been FDA approved. He had his office coordinate with the insurance company.
He was the one that had told me about TEPEZZA. And so I think this is something that could really help you.
And it took some time, but he handled everything. I was approved maybe four months later, and they assigned me a patient access liaison who was able to walk me through the process and also tell me some of what to expect if I was gonna go down this path with TEPEZZA.
Because, you know, it’s a huge unknown and you’re making medical decisions for yourself and trying to have all the information you can. So she was really helpful in that process. I felt like she was there with me, just kind of holding my hand a little bit.
Randi’s Experience with Side Effects
Sometimes people are nervous about getting an infusion. I was nervous.
But I also have read all the information. I mean I grabbed the bull by the horns on that. It’s just the way that particular medicine works. The side effects were a little different with every single infusion that I had. So, my skin did get really dry. One of my infusions also, I had rapid twitches in my eyes and then that went away like after three or four days.
Being fatigued the next day was caused for all eight of them. I would just be tired, not feeling sick, but just tired. Like I want to sleep more than usual. So I would take the day off after the infusion and would do just that. I would just make it a rest day.
I had lost the hair on my arms and on my legs. I did notice I got a little cramping in my legs. That sort of went on for the longest. But it’s been a year since my last infusion this month and I haven’t had any other cramping for a long time.
After the last infusion, the double vision was gone.
The process of your your eyes going back into place and all of that simmering down doesn’t just happen overnight.
I’d say that was closer to my seventh infusion and I’d gone back to my eye doctor again. He was checking me regularly around that point and we looked in that mirror again and I just remember..
...just remember just kind of thinking, Oh, there you are. I know that girl. And I knew then, like, I have one more infusion to go
My symptoms have never come back after the last infusion.
I completed all eight infusions and the symptoms have never returned. I know that I will have thyroid eye disease forever, but it’s not something that I have to think about and carry around with me every day.
Now I’m part of the TED team, which is a peer-to-peer network of thyroid eye disease patients.
The reason that I do tell my story and the reason I do go there is because I know that that story helps other people.
And I know when I talk to them and listen to them on the phone, I hear the relief in their voices from being able to just communicate with another person that has the same disease. And I see what that does for them, and that’s why I do talk about it.
Talk to your doctor about TEPEZZA.
Lily: Oh, so close
Interviewer: Hi, Lily.
Lily: Hi!
Interviewer: I love that we're catching up with you on the pickleball court.
Lily: I know. I'm very excited. It's really fun.
I play tennis. I picked it up during COVID, so this is a lot easier to get the hang of.
Interviewer: So, what other things do you like to do when you're not playing tennis or you know pickleball?
Lily: Yeah so, I also picked up Pilates recently, so that's really fun. I feel like it's a good low impact way you work out. But also hiking, cooking, and I also recently picked up skiing this year too, so I'm excited when skiing season starts in a few months to go down the slopes.
Interviewer: So you’re active; you do a lot of stuff.
Lily: Yeah. I think that's why, like when I was diagnosed, it was like really hard to stay active in the same ways that I did before.
Interviewer: Well Lily, how would you describe yourself to somebody who doesn’t know you?
Lily: Good question. I think I'm very lively, but I don't think you can see that when you first meet me. I think I'm definitely very calm and, just calm and kind I think, and positive.
Interviewer: I can see that because everything you say is said through a smile, so I think that checks out.
Lily: Yes, I think I need to stop smiling as much.
Interviewer: I disagree, I don't think anybody can ever say they should smile less.
Lily: Okay, okay. I'll take that.
Interviewer: How long have you been living with symptoms of Thyroid Eye Disease? When did it all start?
Lily: Around, like, July 2021. I remember it was around the 4th of July, and I noticed, like, one of my eyes looked lopsided.
And it was like bulging.
And it was uncomfortable.
Interviewer: How long did it take when you started experiencing symptoms to when you were diagnosed?
Lily: It was really fast. I was like so scared. I was like, “Oh my gosh, what is wrong with me? I need to go to a doctor.” So, I went to the doctor and it only took about a month or so before I was referred to my endocrinologist and she diagnosed me with like Graves’ disease, and Thyroid Eye Disease.
Interviewer: How did your symptoms impact your ability to do those things you love to do?
Lily: So that part was really tough, just like the vision and being comfortable.
You don’t have as good a reflexes.
Interviewer: Yeah, I can imagine.
So, at what point then, you know, as this is impacting your everyday life and you’re you know, you’re dealing with all of this, you’ve been diagnosed. When did doctors mention to you that there was treatment that could help?
Lily: My endocrinologist is awesome. She like mentioned it in the very first like consultation that I had, appointment with her.
She was like, “There’s this new drug, it’s TEPEZZA. It’s FDA approved and you seem like the perfect candidate for this.” So, I like knew at the outset like this was the option.
Voiceover: TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
Interviewer: Did you have any concerns about going in? Did your endocrinologist share possible side effects of treatment?
Lily: Yeah, I think I had like a few concerns, obviously, because I’ve never had an IV infusion, like it would obviously be something new. But the other symptoms, she was like very upfront with what was possible in terms of side effects. And after looking at them, the side effects I was having from Thyroid Eye Disease were having a bigger impact on my life, and it was something that I was willing to go through with in order to feel better.
Interviewer: What kind of side effects did your endocrinologist tell you were possible?
Lily: She told me about high blood sugar, fatigue, muscle cramps, like hearing loss.
The basic ones that you see when you go to the TEPEZZA website. And I wasn’t too scared off by it. And I did my due diligence, looking into like what I was comfortable with and weighing the possibilities of like my own situation. And for me it was worth it.
Interviewer: Over the course of treatment, did you experience any side effects?
Lily: I did.
I had muscle cramps in my legs and I remember the first time it happened, I thought it was because I went to hike the other day and I was like very sore and my leg was cramping. I was like, “Man, I am really out of shape from this hike, it wasn’t even that long.”
But then I realized, “Oh, like, this is actually one of the symptoms that my doctor told me about, and it’s happening to me.” So, I connected like two and two together and realized, “Okay, this is what’s happening.”
I would have to like massage it, I would like wake up in the night from the pain. But that’s only happened maybe like once every infusion or so.
And then I also had some, like hearing changes. I had some like ringing in my ears. And then when I told my oculoplastic surgeon, he referred me to an audiologist to get a hearing test. And hearing test wise, like everything was fine and the ringing eventually ended after I stopped my infusion.
Interviewer: Was there ever a point where any of these symptoms made you question your decision to take TEPEZZA?
Lily: No, there wasn’t a point in the treatment where I was like, I should stop this treatment because after like the second or third one, I started seeing improvements like very steadily. Where your eyes are,like how they feel and things like that, it was worth it.
Interviewer: As you ended up going through all eight treatments, when did you notice the biggest change?
Lily: I think after the fifth or sixth one, I feel like you can see a dramatic change in my, like, pictures from before and pictures now. I saw like a significant change. I was like, “This is really working. Like, okay, I just need to get through a few more.”
Seeing the results and like going back and seeing your like before, after pictures is like worth all the effort I was like, “Okay, wait. I kind of look like myself again.” I was like, “Wait, this is how I’m supposed to look like.” So, all the people who met me I’m like, “Okay, now you know me.”
I was like “Okay, I’m very proud of myself. Like getting myself through all that and like, that’s something I want to share with other people.”
It feels like all the hard work is like finally paying off.
Interviewer: When was it that you noticed that your side effects were starting to improve?
Lily: Yeah, so, I had them up like till my eighth infusion. And then once it finished, I gradually started noticing them like disappear.
Once I stopped infusion, I didn’t have any more like cramps, Like that wasn’t a thing at all.
But the longest lasting one was the hearing changes.
After a few months, okay, that slowly started going away. So, it was not permanent for me.
Interviewer: When all was said and done and you've got your eight infusions and now the side effects have improved, your symptoms from TED have improved, what was that day like? After your eight infusion was done, did you celebrate in some way?
Lily: Okay, I got a cake and I was like, Okay, I'm going to celebrate myself and eat the cake. Right. And so I actually took a Polaroid like of the day when I finished the infusion. I have my cake to celebrate, but it was like, really, like, freeing to feel like, Okay, like I'm done; Especially since I don't like needles.
So, every time I would get an infusion, it was like, very nerve-racking for me. Like my hands would sweat so, like no more needles, no more infusions, like no more treatments, and I’m getting better. So, it’s like very celebratory.
Thinking of all that you’ve done that whole six months of like getting the medicine was like, “Wow, if I can get through the six months of my life, I can get through like, any six months of my life.”
Interviewer: You share this story with a smile because you come out on the other side of this feeling better. But, what did you learn about yourself over the course of experiencing these symptoms and going through treatment to where you are today?
Lily: I think one thing there’s a lot more to smile about.
I think I learned like I am a lot stronger than I thought I was, and a lot more capable of doing things that I don’t know how to do, like navigating insurance or like trying to figure out what’s happening with the infusion center.
Like, “If I can do this, then like I can do anything” type thing.
Interviewer: I feel like I'm ready to take you on a pickleball. Are you willing to go challenge me out there?
Lily: Yes. Let's go.
Interviewer: Let’s go. Let’s go do it. Okay, I'll follow you.
Lily: awesome.
Interviewer: That’s great. Thank you so much for doing this.
Lily: No, thank you.
My name is Pam, and this is the true story of my struggle with thyroid eye disease.
Back in 2021, I went to my primary care physician because I’d had multiple symptoms that I just didn’t understand. I was really, really shaky, nervous.
Went to the primary care physician, and he told me,
Your numbers are off the charts after doing some bloodwork. And this is the worst case of hypothyroidism, I’ve ever seen.
And then it was a few months after that, that I noticed changes in my eyes.
It literally felt like something was in there pushing my eyeballs out.
I wore sunglasses outdoors and indoors to hide from the public because I didn’t want them to see what my eyes looked like.
I gradually started to see my eyes begin to look like they were pushing out from my face.
The warm compresses didn’t help. Eyedrops didn’t help. Nothing was helping me.
I wasn’t able to read license plate numbers.
They just blurred out to the point where the numbers looked like they were stacked on top of each other.
It was scary.
It was especially scary when the ophthalmologist told me, “look, I really think this is thyroid eye disease now, and it is progressing to the point where I want you to have an emergency appointment with the ophthalmic plastic surgeon.”
So I went to see the ophthalmic plastic surgeon.
He’s like “You do have TED.”
And then we can make a decision on whether TEPEZZA might be right for you.
TEPEZZA (teprotumumab-trbw) is a prescription medicine used to treat Thyroid Eye Disease or TED, no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
When the ocular plastic surgeon prescribed TEPEZZA, I could not have been more happy because I finally could get to a point where I was looking forward to seeing something positive with what was going on with my eyes, instead of something negative.
I was made aware that TEPEZZA was an infused drug and that you would take eight treatments over the course of several months.
Before I started treatment with TEPEZZA, I read about the side effects that were possible with treatment and mine I would have to say were manageable.
I did experience some nausea.
But after treatment 7 and 8 things had started to improve for me and I was happy. I knew that something good was happening.
My eyes didn’t look like they were popping out.
It was an amazing feeling.
After treatment, I think not only do I start to look more normal on the outside, I think I start to feel more normal on the inside because of that. And it’s an incredible feeling.
Thyroid eye disease is something that can take a lot away, but there’s an option there. Talk to your doctor, ask lots of questions, and be your own advocate.
When I look in the mirror. I see a fighter.
I see someone who perseveres, who never gives up.
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:
TEPEZZA may worsen inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, even if you don’t have a diagnosis of IBD before starting TEPEZZA treatment. Tell your doctor right away if you have worsening IBD symptoms, which may include diarrhea with stomach pain or cramps, blood in your stools, sudden urgency to have a bowel movement, or feeling like you need to have a bowel movement even when there’s little or no stool to pass.
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, ear discomfort, 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 see Full Prescribing Information or visit TEPEZZA.com for more information.
Talk to your doctor to see if TEPEZZA could be right for you.
Karen: You wake up one morning, and you experience double vision. So, of course, you have to go seek medical attention. And at this time, you’re pretty much in a desperate state because you experience double vision. Double vision of course, impedes your daily life.
You can’t drive. You can’t read. You can’t walk. And that went on for a period of time, and then the protrusion 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 that I had to take to help me get better.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years.
TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain.
Please stay tuned for additional Important Safety Information later in this video.
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. 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. And 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 two millimeters.
My eye was receding; the double vision went away. Then I finished out the rest of my infusions which there was a series of eight. And at the end of the eighth one my eye had receded five 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. 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.
My journey with this, it’s a very painful one, but the ending is great.
My name is Karen, and TEPEZZA worked for me.
Talk to your doctor about TEPEZZA.
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 had double vision. I had a hard time seeing the perception of things, so driving became a real problem.
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.
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.
A colleague that I’ve worked with for 16 years came over and she’s like, “Jeanne! 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.
TEPEZZA is a prescription medicine used to treat Thyroid Eye Disease (TED), no matter if you’ve had TED for months or years. TEPEZZA may cause infusion reactions. Tell your doctor right away if you have high blood pressure, fast heartbeat, redness of the face or feeling hot, difficulty breathing, headache, or muscle pain. Please stay tuned for additional safety information later in this video.
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 going to work.
It was a slow process, but the bulging became less.
After my last infusion, I woke up without double vision. And I kind of raced to the mirror because I felt my eyes working.
The double vision was gone. I was–I called my husband, I’m like, “Jan, you got to see this!”
It’s a hard diagnosis to have, it’s hard to live with. And to not have the heaviness behind your eyes…
the bulgy eyes …
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.
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.
TEPEZZA may worsen inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, even if you don’t have a diagnosis of IBD before starting TEPEZZA treatment. Tell your doctor right away if you have worsening IBD symptoms, which may include diarrhea with stomach pain or cramps, blood in your stools, sudden urgency to have a bowel movement, or feeling like you need to have a bowel movement even when there’s little or no stool to pass.
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.
Cases of encephalopathy, a condition that affects how the brain works, have been reported in people treated with TEPEZZA. Tell your healthcare provider right away if you, your family member, or caregiver notice any change in your mental status (e.g., confusion, changes in thinking or behavior, memory problems, excessive sleepiness, difficulty speaking, seizures or decreased responsiveness). Your healthcare provider may stop or delay TEPEZZA while they evaluate and treat you as required.
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, ear discomfort, 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.
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.
