Korlym® patient stories

ANGELA: Things were different before I had Cushing’s. My whole life was pretty normal. I was a normal-sized person. I didn’t have any of the health issues that I have today.

Things started changing with my health when I moved to Albuquerque.

Super: Angela
Cushing’s Patient — Undiagnosed for 15 Years
Started Korlym in 2019

Mocha, want to come sit with me?

I ended up getting married, and I got pregnant. From the time I was a teenager, I was told I couldn’t have children because I had problems with my ovaries.

When I got pregnant with him, I was really excited because I thought, oh my gosh, I’m actually, I’m actually pregnant, I’m actually going to—this is happening.

So, I actually had to give birth a month early because my blood pressure was way too high. It put my son’s health in jeopardy. He actually was in distress. I wasn’t expecting what happened afterwards, which was some severe postpartum depression.

After I had him, I had hormonal imbalances from the postpartum depression. I started gaining weight. And what was odd is when I was pregnant with my son, I lost a bunch of weight, and I thought, why am I gaining weight? Like, I already gave birth. And then I couldn’t lose the weight. And I thought, okay, maybe it’s just hormones. Maybe it’s these, you know, antidepressants they put me on.

I would see doctors and I would tell them, “Hey, you know, I’ve done the keto diet for three months and I’ve lost ten pounds and I can’t lose any more. What do I do?” And they would look at me and tell me, “Sorry,” you know, “You need to diet and exercise.” And I would tell them, “No, I swear, I’m dieting and exercising. You need to listen to what I’m telling you. I’m going to see a personal trainer and I’m not gaining muscle. I’m not, like, I’m not losing fat. It’s not actually helping me. Why? Why would it not help me?” And I would almost be crying in their office.

So, you know, it starts with weight gain. Then I got severely anemic, so bad they had to give me iron infusions. And then I got diabetes which—crazy, because I was eating low sugar, low carb, everything. Then high blood pressure. Then my immune system doesn’t work, so I have to do immunotherapy infusions every week, which they think is caused by Cushing’s. So, I started accumulating all of these side effects from Cushing’s, but nobody was correlating that it was Cushing’s. They just kept telling me, “You need to lose weight. You need to exercise.” And I was, I was doing all of that.

And what’s funny is my sister sent me this—this sounds ridiculous, but she sent me a link to a TV show called “Mystery Diagnosis,” and it was somebody who had been diagnosed with Cushing’s, and she was like, “You have this. This is what you have.” And I was like, “Oh, my gosh, I have every symptom.”

I was told I don’t have Cushing’s because it’s too rare for me to be diagnosed with that. And instead, they gave me a referral for gastric bypass. It was, it was just exhausting. It cost a lot of money to go see all these different doctors. And after a while, your insurance goes, “Why are you seeing all these endocrinologists?” Like, “Isn’t one good enough for you?” You know? And you know inside something’s definitely wrong.

Want to come join us?

ANGELA’S HUSBAND: Yeah, absolutely.

ANGELA: If Mocha will let you sit down. Okay.

ANGELA’S HUSBAND: There we go. So, she had always been high energy. So, that’s, that’s, that’s normally what she is. But she wasn’t normally tired afterwards. And I had known her for a long time and that wasn’t like her.

ANGELA: I was told from a doc—, a doctor, that—he told me, he told me a few things. He had told me I wasn’t large enough to have Cushing’s, which I thought was interesting. I’m like, I’m 100 pounds—at the time I was 100 pounds overweight. I’m not large enough to have Cushing’s? That’s crazy. And then, um, he told me my blood pressure wasn’t high enough. And at the time, I didn’t have diabetes. I was pre-diabetic, so my blood sugar was still out of the normal range, but it wasn’t full-blown diabetes yet. So, I needed to become a diabetic to be—you know, it needed to get really bad before they would pay attention.

It’s almost like your fight-or-flight is in, engaged at all times. I would, I cry, because thinking back to how I felt, I knew I wasn’t eating like crazy. I knew I wasn’t eating enough to maintain the weight I was at, at the time, and I knew I wasn’t having the behaviors that they were accusing me of. I thought, I’m a hypochondriac. I—there’s nothing wrong with me. If these doctors are telling me there’s nothing wrong with me, there must be nothing wrong with me. I dismissed it, because I thought, if they don’t think I have it, then I probably don’t.

I just wish doctors would stop and take a moment and listen to their patients. But I think they are so rushed, they don’t have any time with their patients. They have no time.

But then, I had seen my gynecologist—she was great—she was really smart, she knew a lot, she had been in her industry a long time. She actually sat down and she said the words, “I believe you,” which is the first time I had had a doctor say that to me, which was a relief to me, because nobody was saying “I believe you.” And then, you know, her telling me that she believed me was everything I needed. And that was like, “I’m signing up with you, you’re it.”

I think I cried for like 30 minutes in her office. I mean I, it was kind of embarrassing. It was the ugly cry, it was like the—[FEIGNS CRYING]—you know, I was really, really bawling in her office. She tells me, “I’m going to text my friend who’s an endocrinologist.” And I said, “Okay.” And she said, “She said she’ll see you. I’m going to set you up an appointment.”

From the time I first had symptoms to the time I was diagnosed, it was about 15 years. I was completely relieved. At first, I kind of thought, huh, okay, it has a name. It has, it has a solution, maybe. I actually know what’s wrong, I can do something about it.

ANGELA’S HUSBAND: The celebration wasn’t there. I know Angela celebrated a lot because she knew, but you know, I wasn’t certain. So, when she started getting results, that’s where it was like, you know, she’s feeling better. I’m seeing energy come back. She’s got weight loss going on and, you know, that was where that really resonated with me.

ANGELA: When I was dealing with my full symptoms of Cushing’s, I was anxious and I felt psychotic sometimes. I would have anxiety attacks and I was shaking all the time and I couldn’t relax, I couldn’t sleep, I was really sweaty. It was just awful. To now, it’s like night and day.

Now, on Korlym, my weight started dropping. My blood sugar, they are completely normal now. So, we’ve reversed diabetes.

Super: Improvements may include weight loss, changes in waist measurement, changes in how you look (such as the clearing of acne), improved mood, fewer symptoms of depression, clearer thinking, and the return of muscle strength.

I’m calm. I’m relaxed. I mean, that’s been the number one improvement for me is just mentally feeling better. It’s just a complete 180, complete difference.

Super: It is uncertain whether these changes were the result of the effects of Korlym. Participants in the clinical trial reported various symptoms and results through the study.

And now, if I have my own energy, I know it’s my own energy that I have, and I can control it. It’s, it’s all mine. It’s just…it’s been a long 15 years. But I feel like it’s—things have changed and things have gotten better, and I think they’re going to continue getting better. I mean, I have hope for the future.

Super: It is uncertain whether these changes were the result of the effects of Korlym. Participants in the clinical trial reported various symptoms and results through the study.

My goal is to do this crazy trip, where you go to Galapagos, and then you stay there a week and you island hop and snorkel, and then you go to Machu Picchu—and this is where the challenge comes in, because this would be outlandish for me to even contemplate, before Korlym—they take you part way up the mountain, but then they drop you off and you have five hours to make it to the peak. And my goal is to be able to hike that.

Ten years ago, I would have never dreamed that I’d ever be able to take a trip where I’m hiking ten miles up a mountain. Never.

ANGELA’S HUSBAND: Everybody has something going on, so, you know, you just deal with what you have and make the best of it.

ANGELA: So, I just have to turn it into something positive and figure out how I can help other people with the same problem, so they don’t have to go through what I went through.

Cushing’s is not rare to me. It’s not rare to my family. And we need to change things now.

MARK: I came down here with a van full of stuff and a dog, decided on this area. I kind of was taking what I got.

I compare myself to my father a lot. He started his downward spiral about 50. And so I was assuming that was kind of normal. I was going, well, I’m 50, this is what happens. I came down here, basically, to, to die by myself, quietly.

I got very sick when I was 50. So, I went to this healthcare van and I went, “Uh, I’m not really feeling that well. And I’m not sleeping well. And I have a hard time getting up in the morning. And I’m winded. I can’t do anything. It’s like, this is getting worse and worse and worse.” Which is why I had four doctors that just thought I had diabetes.

I wasn’t aware that there was even a consideration of Cushing’s syndrome ‘til I got told I had it. Um, I didn’t know anything about it. I just thought that my diabetes was pretty, um, consistent with not getting any good results. Um, it was, it was getting worse. I mean, it was not getting better.

When they got through checking me out at the healthcare van, they told me to go to the emergency room. “We have a bed for you.” And I went, “Uh, I have a dog in the car.” And they went, “We don’t care.” And they admitted me to the hospital. I was there for three weeks.

I went from the Portsmouth Hospital to a Southern Maine Medical and, um, they seemed to be more appropriate for somebody—I was quite large at the time. And I went to Southern Maine Medical because they could accommodate a larger person for testing. And I came out of it with a heart condition, diabetes. They tried to fit me with a pacemaker. And that wouldn’t work—on drugs the rest of my life for my afib.

Cushing’s syndrome is very interesting because it has such a...an amazing assortment of maladies that go with it. I was on a downward spiral, pretty hard downward spiral. I was joking about it as my warranty expired.

I sat down a doctor that I had in New Hampshire and, and basically said, “What’s my demise?” And he said, “You’re probably going to live a couple of years and you’re probably going to die in your sleep.” And I went, “I can do that. That’s, that’s okay with me. I’ve had a full life and I’m, I’m okay with that.”

I went through several doctors. They just kind of kept me going along. I had a nurse practitioner that recommended me to a new doctor and he confirmed that I had Cushing’s syndrome. And when that got put into the mix, everything snapped to attention and I became a much healthier person. And he put me on Korlym, and that changed everything.

All of a sudden, my metabolism just snapped into, into being where it should be. And I became sensitive to my own insulin, and I started losing weight like crazy.

And I dropped 260 pounds in three years.

When I tell people I have Cushing’s syndrome, the biggest response I get is, “Oh, I know somebody’s dog who had that.” Dogs seem to get more knowledge about Cushing’s syndrome than people do. The awareness is just not there.

It’s not that Cushing’s syndrome is rare; it’s not considered. And there’s a problem with that. And when you get it under control, a lot of those symptoms will change. And that is a good thing. So, it’s all, it all comes about pretty quickly, and it’s, and it’s all positive.

After I got diagnosed with Cushing’s syndrome, I actually had low sugar events happen, which was kind of interesting, because I’d never had that happen before, because my low numbers were in the 200s.

It’s amazing how the turnaround with Korlym changed my entire life.

When I was 50 and I was at my worst, a hundred, hundred-yard walk would get me winded. And I can go all day now. I found that I had unlimited energy. I was amazed at my performance of a number of things that I didn’t think I could do. And so, I kind of took a step back and I came south for the, for the, for the winter, and that way my friends would all go, “Gee, did you hear Mark passed away?” And that hasn’t happened.

I am kind of feeling invincible.

Cushing’s syndrome is an amazing platform for a lot of different symptoms. Instead of going, “Oh, you’re diabetic,” “You’re depressed,” “You have these mal-, other maladies.” Well, if you connect all the dots, it all comes down to Cushing’s syndrome. If I hadn’t been put on Korlym when I did, I wouldn’t be alive now. And then, when I got COVID, I survived that, and I directly, that’s directly because I was healthier when I started.

The perception for Cushing’s syndrome is that it’s rare. And it’s not rare for the people who have it. And I pretty much do the best I can with it. I’ve always had that kind of a Boy Scout attitude of leaving your campground better than you found it, which is a really good way to have a lifestyle.

The time for change is now.

Super: Improvements may include weight loss, changes in waist measurement, changes in how you look (such as the clearing of acne), improved mood, fewer symptoms of depression, clearer thinking, and the return of muscle strength.

PAT: Every doctor I think I went to saw me as a challenge and wanted to fix me. And then when they couldn’t fix me, they just hoped that I would go away and figured I must be a hypochondriac, or something. It took me 15 years and 15 doctors before I was diagnosed.

The first symptom I noticed was the weight gain, um, facial swelling, and then hair in all the wrong places, where I started losing the hair on my head. Hypertension suddenly became a problem. Um, and I was still physically active as much as I could be.

And one thing I kept telling, uh, my primary care physician was it just didn’t make sense that so many things could be wrong with me and that there wasn’t some correlation between all of them.

But he was about ready to sign off my care because he knew that something was drastically wrong with me. But then he thought of this new endocrinologist that he had heard of and sent me to her. And she practically took one look at me and knew that’s what I had.

I had my first surgery in 2003. You know, everybody told me beforehand that after surgery, it wouldn’t be that there was anything wrong with me, but it would just take an, an incredible amount of energy to walk upstairs or to get up and get a cup of coffee, or just to do the little normal things.

After a year, I felt like I’d been given my life back again. I could suddenly function. I could suddenly, um, run again. I love to run on the beach. And my symptoms basically disappeared for another couple of years.

Then in 2010, they started coming back again. I was putting on weight. I was having troubles with pa—fatigue. And I was a full-time nursing student at the time and I just knew I wasn’t going to be able to go on with life as normal.

I had heard about a study, and I contacted them. So I was a participant there in a study at Stanford for two years. I knew that I had to do something, and I think that was one of the things that drew me into the study, as it was a, a possible solution. And it would—and it, it was. For me, it was a solution.

Usually, while I’m on Korlym I feel like I have normal energy levels, which is wonderful, because that’s something that I never had when I was symptomatic. And I also immediately noticed my weight coming back under control again.

I think when someone first begins Korlym treatment, what they experience is very similar to the same symptoms that they would have, um, after pituitary resection. What I experienced was kind of like malaise, um, just not much interest, and sometimes I felt like I had to make myself eat.

Um, I had some lower back pain, some nausea, just being queasy a lot. But those were also things that I experienced after my surgery. So it was very similar in that respect, until my body could get used to operating without the high levels, um, of the cortisol being available to, to it.

Someone who’s looking for treatment of Cushing’s has to recognize that there will be that transition period. In order to get better, you have to be willing to walk through that. And I think most people, because you have such a desire to feel better, are willing to do that.

I had forgotten what it felt like when I had Cushing’s, until I had like one afternoon and I just realized this is what most people feel like all the time. And I realized how different my life had become. But then once, um, Korlym did get FDA approval, they assigned a Patient Advocate. So that was a wonderful help as well.

So I ha—I feel like I’m not alone in the process. I have people to call on if I do have questions, or even—well, because I was in the study I have those resources too, that if I’m having problems getting the drug or something or—they’re still following me. You know, and it’s, it’s just been a wonderful relationship.

SARA: Previously, before I had my first set of twins, I had always been very athletic and fit. Never had any weight problems or health issues. And then I have my babies, got all my baby weight off, was feeling great, and then all of a sudden I got real tired. And then I was gaining about 10 pounds a week. And so, then I was exercising more, eating less, and it was—just kept going, going. I noticed these black things on my stomach and just felt overall very sick.

THOMAS: There was a lot of emotions, uh, not really understanding what was going on. We were both confused. Um, lots of doctors’ appointments. Uh, trying to just really figure out what exactly was going on, so…

SARA: I, uh, found it out myself by looking at a big medical book in Barnes & Noble, and saw picture of a outline with someone with Cushing’s, and I said, oh my gosh, that’s what my body has turned into.

THOMAS: She would stay up every single night. Uh, it’d be 1:00, 2:00 in the morning, I’d wake up, she’d still be awake. I said, go to bed, babe. What are you doing? But she just—she, she had to know, she had to figure out what was going with—on with her body. Something that nobody else could tell her.

SARA: I read that to get diagnosed with Cushing’s you had to have an MRI, because there’s possibly a pituitary tumor. He was, uh—took one look at me and said, you know, oh my gosh, in my, you know, 30 years of being a doctor, I’ve only had one other patient with Cushing’s, and I can tell you right now, you do have Cushing’s, looking at you.

After I had my surgery, I got pregnant again. And so, after I had those babies, my biggest fear was I’m gonna get Cushing’s all over again. And that, uh, first MRI post, you know, second set of twins, I was terrified.

My doctor just kind of was, uh, not quite sure what direction we could really go. He knew that radiation would take—there would—really not do a lot with the radiation. He said that wasn’t really an option, and we can’t really operate with the pit-, you know, pituitary. It just seemed like too much and it seemed very drastic.

I remember it was at 2:30 in the morning and it was dark in my room. My husband’s snoring next to me. And I’m just—I remember reading, you know, Korlym block and cortisol.

NARRATOR: Korlym is a prescription medicine used to treat high blood sugar, also known as hyperglycemia, caused by high cortisol levels in the blood, also referred to as hypercortisolism, in adults with endogenous Cushing’s syndrome who have type 2 diabetes mellitus or glucose intolerance and have failed surgery or cannot have surgery.

Korlym is not for people who have type 2 diabetes mellitus not caused by Cushing’s syndrome.

WARNING: TERMINATION OF PREGNANCY

Pregnancy must be excluded before the initiation of treatment with Korlym because its effects will result in termination of pregnancy.

SARA: I went to my doctor and pretty much was like, put me on this, ‘cause my blood sugars have always been borderline high. And he put me on it and chanced it, and immediately saw results.

NARRATOR: Changes in glucose control may be seen within weeks, but reduction of other symptoms of Cushing’s syndrome may take over two months of therapy with Korlym.

SARA: I remember showing my husband, like, oh my gosh, look at my stomach, it’s the same color. Like everything, it’s all one color. Uh, looking at my skin, and I just remember being like, it’s like my skin is thickening up or something. Like I just felt healthier, I felt—my skin on my face, like a lot of the blemishes went away. The whites of my eyes turned white again.

NARRATOR: Korlym can cause serious side effects, including reduced effects of adrenal hormones or adrenal insufficiency, low blood potassium, and vaginal bleeding.

The most common side effects seen in clinical trials with Korlym were nausea, fatigue, headache, and thickening of the lining of the uterus, or endometrial hypertrophy.

SARA: I was able to take my kids to the zoo, and I had never been able to do that [CRYING] because I’ve been too tired and too grumpy. And so, it was like, it gave me a chance to be a mom again and [LAUGHS], so yeah, this is great. And to be a wife again.

NARRATOR: Please refer to the full Prescribing Information, including the Boxed Warning and Medication Guide available on this website, for further Important Safety Information for Korlym.

THOMAS: Just be there for support. Listen. Um, do the research. Read with her. You know, stay up with her. Go to the doctors’ appointments. Uh, get all the information you possibly can, ‘cause they feel like they’re out there by themselves.

SARA: It’s a very lonely disease, where, you know, everybody thinks you’re crazy and a hypochondriac. The Cushing’s Patient Advocate is someone that is there to listen to, you know, the things you’re going through, the hardships. And that’s what is hard, because in living with Cushing’s, there’s not a lot of people that actually listen. They hear you and they might be looking at you like, huh. But, you know, she’s someone that actually listens and asks you questions. And feels very good to just for once kinda feel like somebody’s there.