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Watch informative videos about Thyroid Eye Disease (TED) and TEPEZZA, including how TEPEZZA works, infusion information, and patient stories.
How TEPEZZA (teprotumumab-trbw) works to treat Thyroid Eye Disease, or TED.
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.
Thyroid Eye Disease, or TED, is a serious vision threatening condition. You may have heard Thyroid Eye Disease called Graves’ eye disease.
To understand what causes TED, you have to go behind the eye.
In the tissue behind the eye are cells which have receptors on their surface that act like switches. But when you have TED, your body’s immune system attacks this tissue, which causes molecules, known as autoantibodies, to turn these switches on. This leads to swelling of the muscle and fat.
The swollen muscle and fat tissue behind the eye can also make the eyes bulge, which your doctor may call proptosis and cause double vision which your doctor may call Diplopia.
TEPEZZA is the first FDA-approved treatment for Thyroid Eye Disease.
TEPEZZA treats a source of TED, not just the symptoms.
While precisely how TEPEZZA works is not fully understood. TEPEZZA is designed to bind to the switch and block it from turning on.
Since TEPEZZA blocks the switches so they cannot turn on, swelling of the muscle and fat tissue goes down.
This can lead to reduced bulging of the eyes.
TEPEZZA can also improve double vision, and in some cases make it completely go away.
Please keep watching to hear Important Safety Information about TEPEZZA.
Talk to your doctor about TEPEZZA.
Get to know Your Thyroid Eye Disease Treatment
Thyroid Eye Disease or TED can be difficult to manage, but you haven't let it stop you.
You took control, got answers, and found help.
You and your doctor chose TEPEZZA.
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.
Chapter 1: To understand what causes TED, you have to go behind the eye.
In the tissue behind the eye are cells that have receptors on their surface that act like switches. When you have TED, your body's immune system attacks this tissue, which causes molecules known as autoantibodies to turn these switches on.
The muscles and the fat tissue swell pushing the eyeball outward, which your doctor may call proptosis. Similarly, it can cause double vision, which your doctor may call diplopia.
TEPEZZA is the first FDA-approved treatment for Thyroid Eye Disease.
TEPEZZA treats a cause of TED, not just the symptoms.
TEPEZZA is designed to bind to the switch and block it from turning on.
Since TEPEZZA blocks the switches so they can't turn on, swelling of the muscle and fat tissue goes down.
This leads to reduced bulging and can also improve double vision and in some cases make it completely go away.
Chapter 2: The Insurance Approval Process.
Now that you and your doctor have decided on TEPEZZA, the next step is to gain approval from your insurance provider.
TEPEZZA is a specialty medicine, which means it may require extra insurance approvals.
These approvals require steps like benefits investigation, and prior authorization that usually take between 30 and 90 days, but in some cases, may take longer.
If you're not familiar with these insurance terms, don't worry. In the next chapter of this video, you'll learn about support services available to help you through the TEPEZZA insurance approval process.
The developer of TEPEZZA believes costs should never stop someone from getting the medicine they need.
They're committed to helping you explore options.
That information will be in the next chapter as well.
Chapter 3: Personalized Support with Amgen By Your Side.
Amgen By Your Side, a patient support program is here to help.
Once you and your doctor have decided TEPEZZA is right for you, you can sign up to be paired with a Patient Access Liaison or PAL for short.
PALs from the Amgen By Your Side team are available for personal, nonmedical, and logistical assistance throughout your treatment, including discussing what your doctor may have explained about starting treatment, helping to understand the insurance process, explaining financial options, helping you plan your first infusion, and more.
If you're interested, ask your doctor if you can sign the patient enrollment form before it's submitted to Amgen By Your Side. Once enrolled, you will receive a call from your PAL.
Chapter 4: Getting your TEPEZZA Infusion.
TEPEZZA is an IV or intravenous medicine. This means it's delivered through a needle placed in your arm. The process of delivering an IV medicine into the body is called an infusion.
A full course of TEPEZZA treatment is 8 infusions. Each infusion is given one time every three weeks. That means the treatment with TEPEZZA will be ongoing for about five months.
TEPEZZA may be given at an infusion center, a type of clinic that specializes in giving infusions.
It may also be given at a doctor's office, hospital or at home.
Check with both your insurance provider and your doctor to see if home infusion may be an option for you.
For your first infusion, having someone take you to and from the appointment is recommended.
When it's time to start your TEPEZZA treatment, you'll be taken to an infusion chair, which is a lot like a recliner. Once the IV is in, all you have to do is relax and receive the infusion.
Each infusion appointment usually lasts one and a half to two and a half hours, but will vary depending on where you get your infusion. During this time, books, music and movies can all provide a welcome distraction.
I was very scared.
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.
Chapter 5: The Possible Side Effects of TEPEZZA.
Here's a list of the most common side effects of TEPEZZA and the percentage of people that experienced them in clinical studies.
Always reach out to your doctor to discuss how to manage side effects.
Chapter 6: How TEPEZZA Can Help Thyroid Eye Disease.
Some people had less eye bulging as soon as six weeks after starting treatment with TEPEZZA, and improvement continued over the full treatment course of 8 infusions.
Once you start seeing results with TEPEZZA, you may want to stop receiving infusions, but it is recommended you receive all 8 of them.
It was a slow process, but the bulging became less. The double vision was gone. To not have the bulgy eyes, it's really nice.
Follow TEPEZZA on Facebook or Instagram to join the community, get important updates, and stay connected.
Congratulations on taking the first step with TEPEZZA.
Talk to your doctor about TEPEZZA.
Understanding the TEPEZZA Infusion Process
TEPEZZA (teprotumumab-trbw) 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.
Chapter 1: Introduction
NURSE: Hi, my name is Stephanie Cooper and I’m a nurse practitioner. I work at an infusion center and I’m an expert at administering infusion medicines
like TEPEZZA. Over the course of this video, I’m going to walk you through the infusion process for TEPEZZA, step-by-step. We’ll go over what the inside of an infusion center is like, what you can expect on infusion day, and more. So, let’s get started.
Chapter 2: Infusion and Infusion Centers
NURSE: TEPEZZA is a special type of medicine called an IV, or intravenous medicine. This means TEPEZZA is given through a needle placed in your arm.
The process of delivering an IV medicine into the body is called an infusion.
There are many kinds of medicines that are infused to treat a variety of conditions. And infused medicines may be more common than you think. In fact, some antibiotics are infused.
Because TEPEZZA is an infusion medicine, it is often given at a specialty clinic called an infusion center. An infusion center has the right equipment and skilled staff who specialize in administering infusion.
NURSE: During your time at the infusion center, your main point of contact will likely be an infusion nurse, like me. My job is to infuse TEPEZZA and make my patients feel as comfortable as possible throughout the process.
Some infusion centers may seat patients in the same room. While others, like this one, may have private rooms for each patient. An infusion center is just one of many places you might go to get your TEPEZZA infusion.
Depending on your doctor, and your insurance provider, you may be able to receive a TEPEZZA infusion at your doctor’s office, a hospital, or at home.
Chapter 3: Getting Your TEPEZZA Infusion
When you arrive at the infusion center, the first thing you’ll do is check in at the front desk.
After checking in and before starting the infusion we will check your weight and vitals.
Then, you’ll be taken to an infusion chair. The infusion chair is a lot like a recliner.
Once you sit down, you’ll want to go ahead and make yourself comfortable.
When it’s time to put in the IV, you’ll be asked to roll up your sleeve. As the IV goes in, you may feel a slight pinch.
Once the IV is in, all you’ll have to do is sit back, relax, and let the medicine do its job.
Your infusion nurse may check in on you from time to time to monitor your vital signs like your temperature, heart rate, blood pressure, and blood glucose levels. They’ll also be checking to make sure you don’t have any reactions to the medicine. If there is anything you need during your infusion, don’t hesitate to ask.
Chapter 4: Preparing For Your TEPEZZA Infusion
NURSE: While your first 2 infusions will take about 90 minutes each, the total time you’ll spend at the infusion center may be between 2½ to 4 hours. This includes the time it takes to check in, as well as the time it takes for the infusion staff to prepare the medicine and monitor you for any reaction to your infusion of TEPEZZA.
Infusions 3 to 8 could be faster, taking about 60 minutes each, depending on your reaction to the infusion. Which means the total time you’ll spend at the infusion center may be between 1½ to 2½ hours.
Keep in mind that these are just estimates, and every patient’s experience is different. Your total time at the infusion center could be shorter or longer. To help your TEPEZZA infusion go as smoothly as possible, there are some simple steps you can take to prepare,
like confirming your appointment date, time, and address. Scheduling rides to and from your appointment, especially for your first infusion. Arriving about 20 minutes before your appointment to give yourself plenty of time to check in and take care of any details.
Packing an infusion care bag with things you may need to stay comfortable, like a book, movie, or music player to help you pass the time. Wearing a loose-fitting shirt that allows your infusion nurse to easily access your arm to take your vitals and insert the IV. And completing the “Before Infusion Reminder List” so you know you have all the details covered.
Chapter 5: After Your TEPEZZA Infusion
After 90 minutes, you’ll have finished your first TEPEZZA infusion. But before you leave the infusion center, there will be just a few more steps to take care of. For starters, your infusion nurse will remove the IV. It will just take a second. Next, you’ll be monitored for a short time to make sure you don’t have a reaction to the infusion.
You can use this time to complete the “After Infusion Reminder List.” It will help you stay on track with treatment
Once your infusion nurse gives you the OK, you’ll be cleared to go. Before you leave, schedule your next infusion for 3 weeks later.
Chapter 6: The Importance of Getting All 8 TEPEZZA Infusions
A full course of TEPEZZA treatment is 8 infusions. Each infusion is given once every 3 weeks. That means your treatment with TEPEZZA will take about 5 months.
Once you start to see results with TEPEZZA, it may be tempting to stop treatment. But for the best results, it’s recommended that you receive all 8 infusions as prescribed by your doctor.
Now that you know what to expect, I hope you’re feeling more comfortable with the TEPEZZA infusion process. Stay tuned to hear about support services available once your doctor has prescribed TEPEZZA. And don’t forget to watch the Important Safety Information at the end of the video.
Chapter 7: TEPEZZA Resources
Once you’ve been prescribed TEPEZZA, you can get one-on-one support by connecting with a Patient Access Liaison, or PAL for short. PALs can help you navigate the insurance process, explain cost assistance options, and help coordinate your infusions.
And for helpful ways to stay on track with your infusions, visit TEPEZZAresources.com
Amgen would like to extent a special thank you to our partners at IVX Health, Area 23 and Flying House Media for making this video possible.
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.
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 Randy, 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. 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 getting back at 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.
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 treatmentsimmediately.”
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.
Jason: Hi, Jacque.
Jacque: Hi.
Jason: This is a little cooler than it is where you're from.
Jacque: It is, thankfully. I'm enjoying it actually.
Jason: Tell me, when you're in beautiful, sunny weather, what's your favorite time of day?
Jacque: Sunrise. I like the sunrise. I like to get up early. I like to see the world wake up. You go to the beach, it's quiet except for the water, of course. Then you hear the birds start waking up and then you see people start walking. So, It's like the best time of the day.
Jason: What are some of your favorite hobbies?
Jacque: I like to draw, I like to paint, I do art therapy, I love to photograph flowers. Exactly.
Jason: Do you like to paint the same things as you photograph?
Jacque: I do.
Jason: What is it that you find so enjoyable about painting and photography?
Jacque: It is a stress reliever. I don't know. It's a way I can express myself.
Jason: With these hobbies, obviously, you need your eyes, you need your eyes to be working well, but living with thyroid eye disease, how has that impacted your hobbies?
Jacque: That impacted my hobbies greatly at one point when I was losing my eyesight and the light sensitivity that I got with thyroid eye disease where I couldn't go outside, so I couldn't enjoy my flowers and I couldn't do photography. But I actually continued to do photography even though it was blurry. I still took pictures and I actually kept those. It's awesome to see the transformation of where that went and where I am now.
Jason: When you look back on those pictures, what does it remind you of? What does it make you feel?
Jacque: It makes me feel that's how I saw the world.
Jason: It's a tough way to see the world. If you're ready, let's have a seat.
Jason: Jacque, tell me how long have you lived with thyroid eye disease?
Jacque: Since February of 2020 when I first started having symptoms.
Jason: What kind of symptoms were those?
Jacque: My eyes started swelling. They got super, super red. I started swelling in my face, under my eyes. My eyes started bulging at one point. That's how it all began.
Jason: At that time, what were you thinking? Because those are not typical symptoms of an everyday kind of ailment.
Jacque: I had cleaned the garage and honestly thought I had touched something and touched my eye and got something in my eye. I went to a optometrist and he thought the same thing. He gave me some eyedrops and sent me on my way and said, "Yes, I don't think anything bad and it should be gone in a couple of days." After a week, I asked if I should go to see the ophthalmologist, which of course he said, "Absolutely." I did get in immediately to him and I started with him and probably got maybe two different types of steroid eye drops.
After that, he wanted me to just take pictures. I took pictures three times a day and I would send them to him every day. Every other day we would talk. Then as it went along and things were getting worse and worse. He got me in to get a MRI of my orbits. Then I got the blood work. That's when he told me, "You have thyroid eye disease," or there's a treatment for it, where there never was, per se, a treatment for it. He sent me to a different neuro-ophthalmologist.
Jason: What was going on in your mind, you have a diagnosis of something you haven't heard of before, but at least there is a treatment?
Jacque: I never heard of thyroid eye disease. I had no idea what it meant, except my first thought was, "Oh my God, I have a thyroid issue." I was told, "No, you have an autoimmune disease that sent a signal to your thyroid and that attacked your eyes." I was like, "Wow, okay. What is this treatment?" "This treatment is infusions." I was like, "Oh my God, I'm a vitamin taker. I've never had to take medication like that." I was totally freaked out about it, actually. I was afraid of it. I came home and I got on the internet and researched it to death and then some.
Jason: At this point, though, you were experiencing some very difficult symptoms as well. How were you weighing those two things out of the fear of taking an infusion treatment when all you've ever really taken are vitamins as opposed to where your quality of life was at?
Jacque: If it's going to treat my disease, I want in on that." I told my doctor, "I'm going to be your poster child. You have to get me on that medication."
Jason: Even though you were afraid, you knew this was something you wanted to do?
Jacque: Yes.
Jason: What were the side effects that your doctor told you were possible?
Jacque: Leg cramps, body hair loss, nausea, diabetics could have their sugar increase.
Jason: Have you always been somebody that tries to look at that sunnier side of life?
Jacque: Yes, thankfully.
Jason: Where does that come from?
Jacque: I would say that comes from my mother, actually. She was a positive soul and always looked at the bright side.
Jason: You decide then to go forward with the treatment, that first day, your first infusion, you must have been pretty nervous walking in?
Jacque: I was so nervous. Yes. Here I am. I can't drive there. I had to be driven. Because I can't see. Light sensitivity was super, super high intensified. At that point, I go in with sunglasses, I have on a hat, and I am scared to death of how's this going to feel. Oh my goodness. I have my iPad, I have my music ready because I'm going to listen to rock and roll. I'm going to get through this. They start the infusion. I could feel the medication going into my veins. I could feel it in my arms. I felt it go straight across my chest, back down the other arm. I thought, "Oh my God, turn up the music, Jacque. Just turn up the music. Don't focus on that. Let that go."
I dealt with it that way. Then I had an awesome team, two nurses that worked in there, and they talked me straight through everything and talked about all kinds of stuff that had nothing to do with that infusion. That made it more comfortable.
Jason: Did you notice when you went in for the second one, maybe you were a little less nervous after that experience, or how did that work?
Jacque: I was absolutely less nervous because five days after that first half a dose, I saw a tremendous amount of less swelling. The caruncle had gone back in, that was coming out of my eye, and it was just amazing. I saw an amazing result and I thought, "Wow, if this is going to do that, I'm going to get my eyesight back, so I'm going to be okay." Every time I went in, I just took snacks. I had my iPad for my music, waters. I was ready.
Jason: Was there a particular treatment where you really noticed your symptoms starting to lessen?
Jacque: Yes. I would say about fourth or fifth treatment, for sure. I had no swelling, no redness coming in. Everything stayed the same. The issue came with my fingernails. This was during not taking this medication and then suddenly having my fingernails deteriorate. It was interesting, right?
Jason: Take me through to the point when you got to your final treatment. What was that day like? Do you have any celebration, or what did that moment mean for you?
Jacque: That was just so awesome because it was almost like, ''Wow, I got my eyesight. I have no swelling. I can see. I can go outside.'' At that point, I still needed a hat and, of course, sunglasses, but it was just like, ''Wow. Just a big relief off my shoulder.'' My nurses that I had at the infusion center, they were awesome. They were amazed at the results.
Jason: Can you take me through those side effects again and did they improve over time?
Jacque: They actually did. In the beginning, I had heart palpitations, too, a little bit. I think that was just being nervous probably mostly, but I think that was one of the side effects you could get. I didn't have nausea very often at all with it, maybe a couple of times total.
The side effects for me got less except for the leg cramps. Those got increasingly worse probably throughout, but then eventually all that went away after the treatment. All the side effects I had have all gone away since I finished the treatments.
Jason: Would you say that you learned anything about yourself and how strong you really are?
Jacque: Yes, I did. I learned something. I learned that you can't do this by yourself. You need to know you're not by yourself. You're not alone. All my doctors, my family, my friends, my co-workers, my boss. Even neighbors that would just text me and say, ''Hey, man, how you doing over there?'' "I'm good."
Jason: As you sit here now thinking of how far you've come over the last few years, how would you describe yourself to somebody who doesn't know you?
Jacque: I am a fighter. I'm very positive by nature, and I'm always going to find that bright end at the end of that tunnel. Always. Somehow it exists.
Jason: Do you think that your mom would be proud of that sentiment?
Jacque: I do. Yes.
INDICATION 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:
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.
*Playing pickleball
JASON: Hi, Lily.
LILY: Hi!
JASON: 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.
JASON: So, what other things do you like to do when you're not playing tennis or now 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.
JASON: 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.
JASON: 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.
JASON: 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.
JASON: I disagree, I don't think anybody can ever say they should smile less.
LILY: Okay, okay. I'll take that.
JASON: How long have you been living with symptoms of Thyroid Eye Disease? When did it all start?
LILY: Yeah, so about two years ago, around, like, July 2021. I remember it was around the 4th of July, and I noticed, like, one of my eyes looked lopsided. The eyelid was a little higher than the other eye, and then this like, grittiness, bulging and like dryness and grittiness is very, very uncomfortable.
JASON: 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 like a month or so before I was referred to my endocrinologist and she diagnosed me with like Graves’ disease, hypothyroidism and Thyroid Eye Disease.
JASON: How did your symptoms impact your ability to do those things you love to do?
LILY: Yeah, tremendously. I think like, light sensitivity is huge. Like, being able to like, go outside during the day and play. I was like, okay, like we can actually go. And then just like the dryness and grittiness, like watering of my eyes. They would like constantly water, it's hard to see the ball when your eyes are watering or things like that. It was hard to like work out when you wake up and like my eyes would get really swollen and puffy, like in the mornings and so, like, I would have to ice my eye rather than like, go out and like, be active and do things like that. So that part was really tough, just like the vision and being comfortable. Like be able to like, move my eyes too. I had like difficulty and pain moving my eyes. So like tracking the ball, obviously. You don't have as good a reflexes.
JASON: 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 an option.
JASON: Did you have any concerns about going in? Did your endocrinologist shared 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, I was like, these side effects, they're not worth like not doing the infusion. 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.
JASON: 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. I think they were relatively reasonable. 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 very worth it.
JASON: Did any of them stand out to you? Any of them concern you maybe more than the others?
LILY: Yeah, I think the ones that I can't control, like the ones with your body that happen, you can't control it, like your blood sugar if it goes up. You can obviously try to eat less sugar, but that's not something you can like actively do, like just not eat something and you'll be fine. But a lot of the symptoms, she told me that they will eventually slowly go away. And so, I think that was something that was like very reassuring to hear, they're not necessarily permanent. It's only like a little bit of pain in this amount of time for you to experience, like life as you know, again.
JASON: Over the course of treatment, did you experience any side effects?
LILY: I did. My biggest one was a rash on my arm where the infusion was, and we could never figure out whether it was from the infusion, from the materials used, the needle or any of the other tape or anything.
JASON: Did you have any of the cramping or anything with your hearing?
LILY: Yes. Yeah, 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.
JASON: Was there ever a point where any of these symptoms make 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 like your ability to like your peripheral vision, to move them around without pain and things like that, it was like very, very worth it.
JASON: As you ended up going through all eight treatments, when did you notice the biggest change? Was there a moment over the course of treatment that you're like, wow, I feel like, everything is improving?
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 and like pain that you suffered through. 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.
JASON: Did you say by the time you finished your eighth infusion, then all of the side effects had improved at that point?
LILY: 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. And I didn't have any rash because I was only when I had the infusion. 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 at all in any way.
JASON: 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 is 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 wracking 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 there the six months of my life, I can get through like, any six months of my life.”
JASON: 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 during the course of my treatment it was pretty hard to smile or be positive or be happy about my future. It was hard to see that there was a light at the end of the tunnel during the process. But after on the other side of it, I realized, “Okay, yeah, there is a light at the end of the tunnel for that.” It was really hard for me to see that when I was in the process of it. 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.
JASON: 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.
JASON: Let’s go. Let’s go do it. Okay, I'll follow you.
*Playing pickleball
LILY: Awesome.
JASON: That’s great. Thank you so much for doing this.
LILY: No, thank you.
INDICATION 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:
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.
Carol: When I'm going to be meeting with the patient and their family, explaining what my role is, I want them to understand that I will be a point person for them
First and foremost, I'm there to listen to what their story is and also let them know that I will be there to support them and ultimately to empower them.
I look at my role as being able to take as much off their plate as I can as they navigate that process, but also helping them understand in layman's terms where they are in the process and what they need to do on their end.
We don't want patients to feel that they're just out there alone and floating in the space of the unknown. We want patients to know they can reach out to us at any time or a family member or a caregiver, we're always available to them.
This company is definitely a company that puts patients first.
Judy: Rare diseases is a whole different animal. These patients are very, very, very underserved.
People ask me, what am I proudest of as far as my career? I can tell you that I have literally helped not just patients, it's the families. Helping them through from a diagnosis of a devastating illness.
The investment in our team, shows that we are dedicated to the patient. We don't want to leave any patient left behind.
Stephanie: For a patient going through thyroid eye disease, it's so hard to get anyone else to understand what they're going through. Knowing that you're working with someone who's also working with other like-minded people, going through the same situation and the same disease and the same symptoms in someone that actually understands. I think it's so valuable for the patient to feel like they have hope and to feel heard.
The way I build a relationship is a lot through trust, and I think that trust comes from listening and trying to help the patient feel understood, because if they don't feel like you care and understand it, you won't be able to build that trust. So, I think feeling the faith in you and knowing that you're going to be there is, again, what helps the patient feel like there might be some hope.
I'm very passionate about wanting to work with patients, and so that was the first thing that drew me to this position.
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.
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.
