TEPEZZA Stories From Real Patients

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.