Real stories from real people

Meet real people living with HoFH and learn about their experiences with this condition and taking Juxtapid, as well as the support they receive from Compass services.

A photo of Jason

Jason

  • Lives in Louisiana
  • Trained technician for a major tire company
  • Diagnosed with HoFH in 2013
  • Taking Juxtapid since 2013
Juxtapid works with other cholesterol-lowering treatments to help me get closer to my cholesterol goals.

Read Jason's story

My childhood was overshadowed by high cholesterol 
As a child, I was constantly experiencing chest pain and a lack of energy that I never really grew out of. After being diagnosed with familial hypercholesterolemia at 14, I spent many years on different cholesterol-lowering therapies without any real results. My symptoms affected my productivity at work and my everyday activities. My employer thought my tiredness was just an excuse. Then when I was 27, my cholesterol levels were checked before I underwent a knee surgery; the results came back over 500. It became clear that my cholesterol could not be controlled by traditional medications. 

Other lipid-lowering therapies on their own didn’t seem to work enough
While I have not had a lot of control over many things in life, one thing I can control is taking my medication. My medications have changed over the years, but the focus has always been primarily on lowering my cholesterol. Even while taking 3 different cholesterol medications, my cholesterol numbers did not go down much. No matter what I tried, I never saw the results I hoped for. I knew that my cholesterol problems were hereditary, but it was not until 2013 that I learned that my high cholesterol was the result of the rare genetic condition known as HoFH. 

Adding Juxtapid helped me see the results I was hoping for
My doctor also told me that Juxtapid is used with other cholesterol-lowering drugs and a low-fat eating plan. I had a discussion with my doctor about Juxtapid and the possibility of serious side effects, such as problems with my liver while taking Juxtapid. My doctor says that Juxtapid works from a different angle than other lipid-lowering therapies. This is why it may help people with HoFH lower their bad cholesterol numbers. I started taking Juxtapid and followed the low-fat eating plan closely, and my first blood test results were very promising! I still have to be diligent about following the low-fat eating plan, which is important when taking Juxtapid to minimize chances of potential stomach problems. My cholesterol numbers are currently low and are closer to the range that my doctor and I wanted to see. I am happy with my results.

Jason lives with HoFH, is taking Juxtpaid, and has agreed to share his personal experience with Juxtapid and HoFH. Individual results may vary.

A photo of Holly

Holly

  • Lives in Iowa
  • Mother of 2
  • Diagnosed with HoFH in 2012
  • Taking Juxtapid since 2014
Juxtapid works by helping my body make less cholesterol.

Read Holly's story

High cholesterol: a family curse
I had my first heart attack at just 35 years old. I knew that high cholesterol ran on both sides of my family. My mother’s brother had experienced a heart attack and needed a heart bypass surgery. When I was 18, my father died from a massive heart attack. Then, when I was 34, my younger sister had a heart attack and passed away unexpectedly. I was devastated after the loss of my sister, but it forced me to take a serious look at my own cholesterol levels.

I was relieved to be diagnosed with HoFH 
At 35 years young, I had my first heart attack. After that, I was prescribed a statin alongside a low-fat eating plan and exercise. But things only got worse: over the next decade, I had bypass surgery, multiple stents put in, and an angioplasty. Finally, after 25 frustrating years of not responding to treatment and feeling like a failure, a doctor informed me that I had a genetic disorder known as HoFH. The diagnosis was a huge weight off my shoulders. 

Juxtapid works by limiting how much bad cholesterol my body produces
My doctor told me about Juxtapid, which at that time had just been approved for adults with HoFH. I learned that it works by addressing a different part of the cholesterol cycle and helps my body make less cholesterol. It works alongside other cholesterol-lowering treatments and a low-fat eating plan to significantly reduce bad cholesterol levels in people with HoFH. My doctor told me about the potential for serious side effects, including problems with my liver. He also said that this was a different approach in treating people with HoFH and that I might see my cholesterol drop significantly. I thought that this might be my chance to get my cholesterol levels where I wanted them to be, so I was willing to give Juxtapid a try.

Seeing Results
After my first 6 weeks on Juxtapid, my blood test results showed that my cholesterol levels had dropped! I was so happy that I jumped off the examination table and hugged my doctor. For the first time in years, I walked away from the doctor’s office feeling relieved. As the weeks went on, my doctor increased my Juxtapid dose until we found a strength that gave me the greatest cholesterol reductions. I am happy with my results, and I am comforted knowing that my cholesterol levels are getting closer to the goal I set with my doctor.   

Holly lives with HoFH, is taking Juxtpaid, and has agreed to share her personal experience with Juxtapid and HoFH. Individual results may vary.

A photo of Amanda

Amanda

  • Lives in New Jersey
  • Teacher
  • Diagnosed with HoFH in 2012
  • Taking Juxtapid since 2013
When I didn’t see results right away, I talked to my doctor about increasing the strength of my dose.

Read Amanda's story

With numbers in the 800s, I started a low-fat eating plan at 3 years old
My pediatrician noticed that I had bright yellow bumps on multiple parts of my body when I was 3 years old. He recognized them as xanthomas and immediately had me tested for elevated cholesterol. My levels were in the 800s, and I was diagnosed with FH. As a young girl, I was forced to live a lifestyle different from everyone else. I tried so hard to lower my cholesterol, but I simply could not get my levels down enough. There were many times that I would just break down and cry, wishing for something that could help or for someone who knew what was wrong with me.

After 16 years of struggling to lower my high cholesterol, I was finally diagnosed with HoFH
When I was 19 years old, I began to see a new doctor who I still see today. He ordered cholesterol tests and looked more closely at my family history, and I was soon diagnosed with HoFH. Finally I had the answers that I had been searching for! After my diagnosis, I began to build a positive relationship with my healthcare team as we looked into treatment options. 

Juxtapid: different doses for different people
In March 2013, my doctor started me on Juxtapid. He told me I had to take it with a low-fat eating plan and my other cholesterol-lowering medications. We also talked about potential for liver problems and other serious side effects. I started on 5 milligrams of Juxtapid daily, which did not lower my cholesterol levels at all. I was frustrated because I was seeing different results from other patients who were receiving the same treatment. I was doing everything according to my treatment plan, but it just wasn’t paying off. So I talked to my doctor, and we both agreed to raise my daily dosage. He raised me to 10 milligrams a day, and I started to see results as my cholesterol levels slowly started to fall. Eventually I moved up to 20 milligrams a day, and I was happy to see a 40% reduction in my LDL cholesterol! I was excited to get closer to a cholesterol level that I had been working toward my whole life! 

Amanda lives with HoFH, is taking Juxtpaid, and has agreed to share her personal experience with Juxtapid and HoFH. Individual results may vary.

A photo of Carol

Carol

  • Lives in Colorado
  • Retired medical technologist
  • Mother of 4
  • Diagnosed with HoFH in 2012
  • Taking Juxtapid since 2015
My Compass support team helps me through each step of my Juxtapid treatment.

Read Carol's story

High cholesterol was no stranger to my family
Two things have defined my life: high cholesterol and adapting to change. I have had to restart my life so many times because of my health, with each adjustment introducing a new way of living. And each change was a direct result of my high cholesterol, something that runs in my family. I lost my father, grandfather, and great grandfather to heart attacks, as well as 3 uncles on my mother’s side who died from heart disease. But I never thought I would personally be affected because high cholesterol seemed to be a “man’s disease” in my family.

My high LDL levels were taking their toll on my health
After my husband and I got married, I worked as a medical technologist and had the opportunity to take all kinds of health tests. I was surprised to learn that my cholesterol levels were close to 600! As the years went on, my health only became worse. When I was 43, on a family hike with my husband and 4 children, I collapsed and was unable to get back up. I was rushed to the hospital and had my first heart attack 5 days later. Over the next 10 years, I went through multiple blood vessel procedures and open-heart surgeries, and I tried every new statin that came out. But my cholesterol levels remained high.

Comforting support with Juxtapid and Compass   
In 2012 I was finally diagnosed with HoFH. My long wait for answers was finally over. My doctor told me that there was a medication called Juxtapid shown to help lower bad (LDL) cholesterol in people with HoFH when used with other cholesterol-lowering medications and a low-fat eating plan. My doctor also told me about possible serious side effects and liver problems. I was excited to learn that Juxtapid comes with a program called Compass that would help me get started and answer all of my questions about Juxtapid. Before starting Juxtapid, I was contacted by Compass team members who helped me handle my health insurance and worked with me to set a low-fat eating plan that fit my lifestyle. From the start, the Compass program has been extremely helpful in my experience with Juxtapid.     

After I started taking Juxtapid, my doctor and I were happy with how my cholesterol numbers were coming down. I have had to increase my dose a few times to see results that were right for me. During this time I have worked very closely with my Compass Registered Dietitian to stay on my low-fat eating plan. I finally feel that I am better managing my HoFH with Juxtapid, and my Compass support team is here to help me every step of the way.

Carol lives with HoFH, is taking Juxtpaid, and has agreed to share her personal experience with Juxtapid and HoFH. Individual results may vary.

What is Juxtapid?

Juxtapid® (lomitapide) capsules is a prescription medicine used along with diet and other lipid-lowering treatments, including low-density lipoprotein (LDL) apheresis where available, in adults with homozygous familial hypercholesterolemia (HoFH) to reduce LDL (“bad”) cholesterol, total cholesterol, a protein that carries bad cholesterol in the blood (apolipoprotein B), and non-high-density lipoprotein cholesterol (non-HDL-C).

Studies have not been conducted to tell us whether Juxtapid can help prevent problems from high cholesterol, such as heart attack, stroke, death, or other health problems. Studies have also not been conducted to tell us whether Juxtapid is safe for use in people with high cholesterol who do not have HoFH, including those with heterozygous familial hypercholesterolemia (HeFH).

IMPORTANT SAFETY INFORMATION

Juxtapid is available only through certified pharmacies that are enrolled in the Juxtapid REMS Program. Your doctor must be enrolled and certified in the program in order to prescribe Juxtapid.

Juxtapid may cause serious side effects including:

Liver problems

  • Juxtapid can cause liver problems such as increased liver enzymes or increased fat in the liver. For this reason, your doctor should do blood tests to check your liver before you start Juxtapid and while you are taking Juxtapid (especially if your dose is increased). 
  • You should tell your doctor if you have had liver problems in the past, including liver problems while taking other medicines.
  • Stomach problems can also be a symptom of liver problems. Tell your doctor right away if you have nausea; vomiting or stomach pain that gets worse, does not go away, or changes; fever; yellowing of your eyes or skin; feeling more tired than usual; or having flu-like symptoms while taking Juxtapid because these may be signs of liver problems.
  • Do not drink more than 1 alcoholic drink per day while taking Juxtapid.

Harm to your unborn baby

  • Do not take Juxtapid if you are pregnant, think you may be pregnant, or are planning to become pregnant.
  • You should have a negative pregnancy test result before you can start on Juxtapid. Use effective birth control while taking Juxtapid. If you become pregnant while taking Juxtapid, stop taking Juxtapid and call your doctor right away.

You should not take Juxtapid if you

  • Are taking medications known as moderate or strong CYP3A4 inhibitors (for example, certain medications used to treat bacterial, fungal, or viral infections, as well as certain medications used to treat depression, high blood pressure, or angina). These medications may affect how your body breaks down Juxtapid.
  • Have moderate to severe liver problems or active liver disease, including abnormal liver function tests.

Other possible side effects of Juxtapid:

  • The most common side effects of Juxtapid are stomach problems including diarrhea, nausea, vomiting, cramps/pain, indigestion, and/or gas. You may be able to reduce your chance of stomach problems by following an eating plan consisting of less than 20% of calories from fat.
  • Juxtapid makes it harder for some fat-soluble nutrients, such as vitamin E and fatty acids, to get into your body. Take supplements that contain fat-soluble vitamins each day while you take Juxtapid. Ask your doctor, nurse, or dietitian how to take them.

Tell your doctor if you have any side effect that bothers you or that does not go away. Stop taking Juxtapid and tell your doctor if you have severe diarrhea, especially if you also have lightheadedness, decreased urine output, or tiredness. These are not all the possible side effects of Juxtapid. For more information, speak with your doctor or pharmacist.

Tell your doctor about all the medicines you take, including prescription and non-prescription medicines, vitamins, and herbal supplements. Juxtapid may affect the way other medicines work, and other medicines may affect how Juxtapid works.

You are encouraged to report negative side effects of prescription drugs to your doctor. You may also report side effects to the FDA at www.fda.gov/medwatch or call 1-800-FDA-1088.

This is the most important information about Juxtapid. For more detailed information, please see the Medication Guide and Prescribing Information.

All people featured on this site are real patients living with HoFH and were taking Juxtapid at the time of the photo shoot.

 

This information is intended for US healthcare providers

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