TEPEZZA Stories from Real Patients

^*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:

• Have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
• Are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.
• Are pregnant or plan to become pregnant. TEPEZZA may harm your unborn baby. Tell your doctor if you become pregnant or suspect you are pregnant during treatment with TEPEZZA.
  • Women who are able to become pregnant should use an effective form of birth control (contraception) prior to starting treatment, during treatment and for at least 6 months after the final dose of TEPEZZA.
• Are breastfeeding or plan to breastfeed. It is not known if TEPEZZA passes into your breast milk. Talk to your doctor about the best ways to feed your baby during treatment with TEPEZZA.
• Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What are the possible side effects of TEPEZZA?

The most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, dry skin, weight loss, nail problems, and changes in menstruation.

This is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.

Please visit TEPEZZA.com for more information.

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:

• Have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
• Are currently being treated for diabetes, have been diagnosed with diabetes, or know your blood sugar is high.
• Are pregnant or plan to become pregnant. TEPEZZA may harm your unborn baby. Tell your doctor if you become pregnant or suspect you are pregnant during treatment with TEPEZZA.
  • Women who are able to become pregnant should use an effective form of birth control (contraception) prior to starting treatment, during treatment and for at least 6 months after the final dose of TEPEZZA.
• Are breastfeeding or plan to breastfeed. It is not known if TEPEZZA passes into your breast milk. Talk to your doctor about the best ways to feed your baby during treatment with TEPEZZA.
• Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, dietary and herbal supplements. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What are the possible side effects of TEPEZZA?

The most common side effects of TEPEZZA include muscle cramps or spasms, nausea, hair loss, diarrhea, feeling tired, high blood sugar, hearing problems, taste changes, headache, dry skin, weight loss, nail problems, and changes in menstruation.

This is not a complete list of all possible side effects. Tell your doctor or treatment team about any side effect you may have.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.

Please visit TEPEZZA.com for more information.