Hear adults living with FCS share their experiences with TRYNGOLZA
Roxanne: Driven by Hope
Roxanne shares her journey from growing up in a family familiar with FCS to learning how to manage it on her own. Discovering TRYNGOLZA not only helped her manage her condition but gave her hope for the future.
Individual results may vary.
Aaron: A New Lens on Life
Aaron shares how TRYNGOLZA helps him manage his FCS and how he's moving forward on his journey of becoming the husband and father he wants to be.
Individual results may vary.
Genevie: Running From Adversity
Genevie tells her story of wanting to run away from her FCS, until TRYNGOLZA helped her take back control.
Individual results may vary.
Read transcript
Roxanne: This is a picture of me and my dad. I call him Papi, my hero.
This picture actually just reminds me of how much he was there for us, making sure that we were always okay.
FCS impacted my family a lot. They tested me when I was born because my sister, Emily, already had it. And I came out with the same condition. You go to doctors, and they basically tell you we don't have answers. There's no medication out there. We weren't the normal, typical kids where we can have birthday cakes, or we can have specific foods. But my dad did everything in his power to try to have somewhat a normal life.
So, fast food. He would get us the burger with no meat, no cheese, no mayo, and he would create it in the car. The ketchup, the turkey, the fat-free cheese from home. He did that for me.
My Dad used to say, “No hagas trampa,” but in English it would be, “Don't cheat off your diet.” It was like a constant reminder.
But when I moved away from home, it was hard. Going out, even if you ask, “Try not to put oil or butter,” you'll still get the plate of that food. So, I would just eat it. And it ended up getting me sick.
Actually, there was one month where I had 3 pancreatitis, back to back. And that was, that was awful. The pain is so severe. Then I would go to the hospital and they would ask me like, “How did you drive here with the pain?” And I'm like, I just did it. You know, I just, I drove, there's no other option. So, I would drive myself. That was hard.
I decided to move back to Florida to be near family again. I felt like there has to be more answers out there. There has to be doctors. And my Dad's like, you need to look for a lipid specialist.
The office told me about a trial for adults that have FCS. And I was excited. I was like, what trial, what clinical, you know, what's going on? I didn't, I never heard of this.
The trial was for TRYNGOLZA, a prescription medicine for adults with FCS that you take along with your diet to lower your triglycerides.
In the clinical trial, people taking TRYNGOLZA saw their triglycerides lowered by 43% after 6 months. They also had fewer attacks of acute pancreatitis.
I take TRYNGOLZA with an autoinjector once a month. I get the prescriptions sent to the house, so it's super easy.
Ionis Every Step has been super helpful in answering any questions that I may have.
My doctor talked to me about the potential side effects of taking TRYNGOLZA. I've had a little soreness around the injection, but that's it. Everyone's experience may be different. They should talk to their doctor about side effects that may occur with treatment.
Since taking TRYNGOLZA, my triglycerides have lowered more than half.
I have a lot of hope now. I don't get sick as often. I'm not missing as much work. I'm looking forward to traveling, have a family, and settle down.
My dad, I would be lost without him. He was always there for me, but now I can't be there for him. So, it made it possible for me. Thank you.
With TRYNGOLZA, I finally feel in control. Ask your doctor about FCS and if TRYNGOLZA could be right for you.
INDICATION
TRYNGOLZA (olezarsen) is a prescription medicine used along with diet to reduce triglycerides (fat in the blood) in the treatment of adults with a condition that keeps the body from breaking down fats called familial chylomicronemia syndrome (FCS). It is not known if TRYNGOLZA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
Do not use TRYNGOLZA if you have had a serious allergic reaction to TRYNGOLZA or any of the ingredients in TRYNGOLZA.
Before using TRYNGOLZA, tell your healthcare provider about all of your medical conditions, including if you: are pregnant or plan to become pregnant, and are breastfeeding or plan to breastfeed. It is not known if TRYNGOLZA can harm your unborn baby, or if it passes into your breast milk and if it can harm your baby.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of TRYNGOLZA?
TRYNGOLZA can cause side effects including allergic reactions that may be serious. Allergic reactions can include redness of the skin, red itchy bumps (hives), swelling of the face, chills or trouble breathing. Stop taking TRYNGOLZA and call your healthcare provider or get emergency help right away if you have any of these symptoms.
The most common side effects of TRYNGOLZA include injection site reactions (such as redness or pain at the injection site), decreased platelet count (blood cells that help to clot blood), and joint pain or stiffness.
These are not all the possible side effects of TRYNGOLZA. Tell your healthcare provider or treatment team about any side effect you may have.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
Please see full Prescribing Information and Patient Information for TRYNGOLZA.
Read transcript
Katy: I came home one day and he’s doing chores. I literally said, who is this person and what have you done with my husband? That was the moment for me when I realized that something was very different.
Aaron: Growing up, I kind of knew something was wrong. If you can imagine waking up with flu symptoms, but it’s every day on top of every day, it’s exhausting. We went to a bunch of different doctors. I went to specialists and it never got better. I’d had pancreatitis over 34 times, and the last time I was having some major body shutdown. And it really scared me. I’d seen 14 doctors by this time, and I was really, really close to just giving up.
Theron being born with autism put in really sharp focus what I wanted to do and who I wanted to be—and that was the best dad and husband possible. But I just didn’t have the energy to do it. Katy looked at me straight in the eyes and said, please see one more doctor. He was a lipid expert and he came in and said, I want to look at a few things. Let me see your palms. Let me see behind your ears. And he looked into my eyes, do you ever get these red bumps? And he said, you know, your body doesn’t process fat and that’s what’s causing the stomach problems, the body ache, the fatigue. And he goes, congratulations, you have FCS. It was like my life coming back to me, but through the lens of this diagnosis. I was told, probably not in our lifetime is there going to be a drug for this.
Eventually, TRYNGOLZA became available. TRYNGOLZA is a prescription medicine for adults with FCS that you take along with your diet to lower your triglycerides.
I was worried I wouldn’t be able to go on TRYNGOLZA because my genetic test wasn’t positive, but my doctor told me that it didn’t matter because I was clinically diagnosed. After 3 months of treatment, my doctor rechecked my triglycerides and they had lowered by more than 50%. I pinched myself. I think Katy and I both kind of were like, I think they need to recheck them. And I feel better knowing that I might have fewer pancreatitis events. In the clinical trial, people taking TRYNGOLZA saw their triglycerides lowered by 43% after 6 months. They also had fewer attacks of acute pancreatitis. My doctor talked to me about the potential side effects of taking TRYNGOLZA. While I didn’t experience any side effects, others may be different. They should talk to their doctor about side effects that may occur with treatment.
I take TRYNGOLZA once a month. I can keep it at room temperature for up to 6 weeks. I’m looking forward to doing a bunch of travel, going to concerts and wrestling events and all kinds of stupid things. Especially with you. It’s one less thing on my plate. So my plate has opened up to do other things…being a better husband, being a better dad, being a better friend to people. I’ve kind of prioritized relationships over almost anything else. Man, nothing makes life more crystal clear than having a kid with special needs. I want to make up for 48 lost years, and I want to live my best years with Katy moving forward.
Katy: He’s pretty special.
Aaron: TRYNGOLZA worked for me. Ask your doctor about FCS and if TRYNGOLZA might be right for you.
INDICATION
TRYNGOLZA (olezarsen) is a prescription medicine used along with diet to reduce triglycerides (fat in the blood) in the treatment of adults with a condition that keeps the body from breaking down fats called familial chylomicronemia syndrome (FCS). It is not known if TRYNGOLZA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
Do not use TRYNGOLZA if you have had a serious allergic reaction to TRYNGOLZA or any of the ingredients in TRYNGOLZA.
Before using TRYNGOLZA, tell your healthcare provider about all of your medical conditions, including if you: are pregnant or plan to become pregnant, and are breastfeeding or plan to breastfeed. It is not known if TRYNGOLZA can harm your unborn baby, or if it passes into your breast milk and if it can harm your baby.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of TRYNGOLZA?
TRYNGOLZA can cause side effects including allergic reactions that may be serious. Allergic reactions can include redness of the skin, red itchy bumps (hives), swelling of the face, chills or trouble breathing. Stop taking TRYNGOLZA and call your healthcare provider or get emergency help right away if you have any of these symptoms.
The most common side effects of TRYNGOLZA include injection site reactions (such as redness or pain at the injection site), decreased platelet count (blood cells that help to clot blood), and joint pain or stiffness.
These are not all the possible side effects of TRYNGOLZA. Tell your healthcare provider or treatment team about any side effect you may have.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
Please see full Prescribing Information and Patient Information for TRYNGOLZA.
Read transcript
I've always had this tendency to run away from my problems.
FCS has been such an unknown for me. I was told there was never going to be a medication that was going to work for me. I just didn't want to face the scariness of the future.
I was diagnosed with FCS when I was a baby. I had a real limited but safe diet. We certainly weren't experimenting eaters. My mom found out angel food cake was fat-free, so that's the one I had for every occasion.
When I was in middle school my friends were saying well just have a french fry. And trying it for the first time it's like wow that tastes really good, but I would get a good stomach ache.
The first time that I really suffered is when I was pregnant with my daughter and I got pancreatitis attacks. I was hospitalized multiple times. I was in a lot of pain. That was a really, really difficult time. But I thought, I've got a daughter now. And I was resolved to double down on all my efforts to be as healthy as I can for somebody else.
As the years progressed, no matter how hard I tried, my triglyceride levels would just rise higher and higher. It was frustrating. I would do all that I could and there was this thing that was happening that was out of my control. The thing that gets me the most is, I really, really want to show up for people. But I wasn't myself anymore. I stopped making plans. I stopped being reliable. I just kind of wanted to run away.
Fast forward, my doctor told me that there was this promising trial. I never even had it in my head that that was a possibility. In the trial, they put me on TRYNGOLZA, which is a prescription medicine for adults with FCS that you take along with your diet to lower your triglycerides. In the clinical trial, for people taking TRYNGOLZA, their triglycerides were lowered by 43%.
My doctor talked to me about the potential side effects of taking TRYNGOLZA. While I didn't experience any side effects, others may be different. They should talk to their doctor about side effects that may occur with treatment.
I'm thrilled to be able to show up for my people. My family and my friends have all been on this journey with me and they've been so incredibly supportive. It just feels really powerful that I can reliably give back.
I just give myself an injection once a month and now that I have a lower triglyceride level, I don't worry about getting pancreatitis. I feel like I'm just really running confidently towards my future.
With TRYNGOLZA, I can be in control.
INDICATION
TRYNGOLZA (olezarsen) is a prescription medicine used along with diet to reduce triglycerides (fat in the blood) in the treatment of adults with a condition that keeps the body from breaking down fats called familial chylomicronemia syndrome (FCS). It is not known if TRYNGOLZA is safe and effective in children.
IMPORTANT SAFETY INFORMATION
Do not use TRYNGOLZA if you have had a serious allergic reaction to TRYNGOLZA or any of the ingredients in TRYNGOLZA.
Before using TRYNGOLZA, tell your healthcare provider about all of your medical conditions, including if you: are pregnant or plan to become pregnant, and are breastfeeding or plan to breastfeed. It is not known if TRYNGOLZA can harm your unborn baby, or if it passes into your breast milk and if it can harm your baby.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of TRYNGOLZA?
TRYNGOLZA can cause side effects including allergic reactions that may be serious. Allergic reactions can include redness of the skin, red itchy bumps (hives), swelling of the face, chills or trouble breathing. Stop taking TRYNGOLZA and call your healthcare provider or get emergency help right away if you have any of these symptoms.
The most common side effects of TRYNGOLZA include injection site reactions (such as redness or pain at the injection site), decreased platelet count (blood cells that help to clot blood), and joint pain or stiffness.
These are not all the possible side effects of TRYNGOLZA. Tell your healthcare provider or treatment team about any side effect you may have.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
Please see full Prescribing Information and Patient Information for TRYNGOLZA.
FCS=familial chylomicronemia syndrome.