Regaining a Sense of Stability: My Schizophrenia Treatment Journey
Patrick is a patient advocate part of the SHARE Network, a program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring. He is a real patient with schizophrenia and was compensated by Janssen Pharmaceuticals, Inc., for his time to develop this content.
If a Janssen treatment has made a difference in your life or the life of a loved one, we hope you will consider joining the SHARE Network. Every story is unique.
Everyone knew me as your typical straight-A student. I worked hard, studied, and it paid off. I was voted the smartest student in my school and was encouraged to publish some of my work.
Starting a new class or subject can be nerve-racking for many, but there was more to it for me. Because in the flip of a switch, the thing I excelled at — studying and learning — became a challenge for me.
My thought patterns were becoming unclear. Then my writing became jumbled and incoherent. My sentences became “word salad,” a mix of words and phrases that just didn’t make sense when I put them together. I started to become paranoid, to the point where I thought people could hear my innermost feelings. Something was wrong.
My teachers knew it. My parents knew it. I knew it. But we didn’t know what it was.
Luckily, I have a great support system in my family. They helped me push for answers, even when we didn’t know what to ask or who to turn to. Their encouragement and persistence led me to my psychiatrist, who eventually diagnosed me with schizophrenia.
While the diagnosis was initially hard for me to wrap my head around, I was relieved. I finally had some answers as to why my life had suddenly turned upside down. Thanks to my psychiatrist, I was hopeful that through treatment, I might be able to find some sense of normalcy again.
After my diagnosis, my psychiatrist treated me with several different oral medications trying to find which one worked best for me. He explained to me that this can be common for people living with schizophrenia, to try different oral medications before finding a treatment that works for them. They each worked well for periods of time, but I was determined to find what would work best for me. I decided to take some time away from school and get a job to figure out what was next. I started taking different jobs working as a janitor, tutor, and in the food service industry, before I eventually started taking classes again at my local community college.
However, I began to realize that managing my treatment was time-consuming and created challenges, such as struggling to remember to take my daily medications, along with feeling like they were inhibiting my ability to live a full life and pursue my academic goals because I was always thinking about my next dose.
I spoke with my psychiatrist and treatment team, including my friends, family, and loved ones, and they recommended that I switch to a long-acting injectable (LAI) called INVEGA SUSTENNA® (paliperidone palmitate), which only needs to be administered once a month. (Please see Important Safety Information, including Boxed WARNING and a list of side effects, below. Click here for Prescribing Information.) My psychiatrist walked myself and my family through the risks and benefits and explained that the medication is designed to be slowly released in your system. This seemed like a better fit for my lifestyle since it removed the daily need to take my oral schizophrenia medication. So, we decided that an LAI could be a good option for me, and I gave it a try.
After some time on my first LAI — and finding music as a means for meditation — alongside support from my psychiatrist, family, and friends, I started to regain a sense of independence and noticed I was spending less time thinking about my next dose. I felt that my physical and mental health was improving. And day-by-day, I had a greater sense of stability, which I hadn’t experienced for a while.
After a few years, I graduated with an associate’s degree and enrolled in a local university to pursue my bachelor’s degree. During this period, I was eager to spend less time managing my medication and symptoms so that I could focus on the other long-term goals I wanted to achieve. My psychiatrist let me know that there was another Janssen schizophrenia LAI available called INVEGA TRINZA® (paliperidone palmitate), which only needs to be administered once every three months. (Please see Important Safety Information, including Boxed WARNING and a list of side effects, below. Click here for Prescribing Information.) Since everything had been going well, I was excited to hear about the opportunity to transition to INVEGA TRINZA®.
I graduated from a local university with associate degrees in mathematics and physical science, and started an internship shortly after. I had so much going on in my life, and I started to feel more like myself again. And the best part? I had no daily reminder of my schizophrenia medication.
I was doing well managing my treatment plan, so when my psychiatrist presented me with the opportunity to participate in a Janssen clinical trial for its potential new treatment option, INVEGA HAFYERA® (paliperidone palmitate), I decided to participate because I knew that I’d be getting either the medicine I was on now, INVEGA TRINZA®, or the new medicine. (Please see Important Safety Information, including Boxed WARNING and a list of side effects, below. Click here for Prescribing Information.)*
INVEGA HAFYERA® was later approved by the FDA in 2021 as the first six-month LAI treatment option, which is the medication I’m currently being treated with. Looking back to when I was first diagnosed to then finally transitioning to INVEGA HAFYERA®, it’s hard to describe the relief I now feel. With my symptoms under control and the assurance that I will never miss a dose of my medication without my treatment team being aware, this treatment plan has given me more freedom from having to remember to take my medication every day, and the flexibility to set treatment goals that are not defined by my schizophrenia medication. Now I spend my days focusing on what matters most to me: my family and friends and completing my next degree. I want to keep my options open, and many fields inspire me. Recently, I’ve started studying chemistry and its role in the research and discovery of new medications, because I want to help people just like me.
If you’re just starting your treatment journey or are nervous about trying a new option, talk to your healthcare provider and the people in your life who care about you. For me, starting on a Janssen schizophrenia LAI eventually created the opportunity to have fewer doses a year and was a pivotal turning point in my ability to manage my schizophrenia. The flexibility and ease of being on an LAI has really made all the difference in my ability to pursue my treatment goals, which I wasn’t even sure was possible after I was diagnosed. It’s important to consider all your options, in collaboration with your health care provider and treatment team, to determine what will work best for you.
The most important thing I’ve learned from living with schizophrenia is that you just have to keep going. The path to finding the right treatment and achieving your goals may be unconventional, but no matter how hard it may be, just keep going.
To learn more about Patrick and his experience with schizophrenia and Janssen schizophrenia LAIs, watch his video here.
*A long-term global clinical study was conducted to show whether INVEGA HAFYERA® was as effective as (noninferior to) INVEGA TRINZA® in symptom control for adult patients with schizophrenia with similar safety and side effects. Patients who were stabilized on an appropriate dose of INVEGA SUSTENNA® or INVEGA TRINZA® were then randomized to receive either INVEGA TRINZA® or INVEGA HAFYERA®.
INVEGA HAFYERA™ (6-month paliperidone palmitate) is a prescription medicine given by injection every 6 months by a healthcare professional and used to treat schizophrenia. INVEGA HAFYERA™ is used in adults who have been treated with either:
- INVEGA SUSTENNA® (paliperidone palmitate) a 1-time-each-month paliperidone palmitate extended-release injectable suspension for at least 4 months
- INVEGA TRINZA® (paliperidone palmitate) a 1-time-every-3-months paliperidone palmitate extended-release injectable suspension for at least 3 months
INVEGA TRINZA® is a prescription medicine given by injection every 3 months by a healthcare professional and used to treat schizophrenia. INVEGA TRINZA® is used in people who have been adequately treated with INVEGA SUSTENNA® for at least 4 months.
INVEGA SUSTENNA® is a prescription medicine given by injection by a healthcare professional.
INVEGA SUSTENNA® is used to treat schizophrenia in adults.
IMPORTANT SAFETY INFORMATION
Do not receive INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® if you are allergic to paliperidone, paliperidone palmitate, risperidone, or any of the ingredients in INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®. See the end of the Patient Information leaflet in the full Prescribing Information for a complete list of INVEGA HAFYERA™, INVEGA TRINZA® and INVEGA SUSTENNA® ingredients.
Before you receive INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®, tell your healthcare professional about all your medical conditions, including if you:
- have had Neuroleptic Malignant Syndrome (NMS)
- have or have had heart problems, including a heart attack, heart failure, abnormal heart rhythm, or long QT syndrome
- have or have had low levels of potassium or magnesium in your blood
- have or have had uncontrolled movements of your tongue, face, mouth, or jaw (tardive dyskinesia)
- have or have had kidney or liver problems
- have diabetes or have a family history of diabetes
- have Parkinson’s disease or a type of dementia called Lewy Body Dementia
- have had a low white blood cell count
- have had problems with dizziness or fainting or are being treated for high blood pressure
- have or have had seizures or epilepsy
- have any other medical conditions
- are pregnant or plan to become pregnant. It is not known if INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® will harm your unborn baby
- If you become pregnant while taking INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®, talk to your healthcare professional about registering with the National Pregnancy Registry for Atypical Antipsychotics. You can register by calling 1-866-961-2388 or visit http://womensmentalhealth.org/clinical-and-research-programs/pregnancyregistry.
- Infants born to women who are treated with INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® may experience symptoms such as tremors, irritability, excessive sleepiness, eye twitching, muscle spasms, decreased appetite, difficulty breathing, or abnormal movement of arms and legs. Let your healthcare professional know if these symptoms occur.
- are breastfeeding or plan to breastfeed. INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® can pass into your breast milk. Talk to your healthcare professional about the best way to feed your baby if you receive INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®.
Tell your healthcare professional about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. INVEGA HAFYERA™, INVEGA TRINZA® and INVEGA SUSTENNA® may affect the way other medicines work, and other medicines may affect how INVEGA HAFYERA™, INVEGA TRINZA® and INVEGA SUSTENNA® works.
Your healthcare provider can tell you if it is safe to receive INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® with your other medicines. Do not start or stop any medicines during treatment with INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® without talking to your healthcare provider first. Know the medicines you take. Keep a list of them to show to your healthcare professional or pharmacist when you get a new medicine.
Patients (particularly the elderly) taking antipsychotics with certain health conditions or those on long-term therapy should be evaluated by their healthcare professional for the potential risk of falls.
How will I receive INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®?
- Follow your treatment schedule exactly as your healthcare provider tells you to.
- Your healthcare provider will tell you how much you will receive and when you will receive it.
What should I avoid while receiving INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®?
- INVEGA HAFYERA™, INVEGA TRINZA® and INVEGA SUSTENNA® may affect your ability to make decisions, think clearly, or react quickly. Do not drive, operate heavy machinery, or do other dangerous activities until you know how INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® affects you.
- Avoid getting overheated or dehydrated.
INVEGA HAFYERA™, INVEGA TRINZA® and INVEGA SUSTENNA® may cause serious side effects, including:
- See “What is the most important information I should know about INVEGA HAFYERA™, INVEGA TRINZA® and INVEGA SUSTENNA®?”
- stroke in elderly people (cerebrovascular problems) that can lead to death
- Neuroleptic Malignant Syndrome (NMS). NMS is a rare but very serious problem that can happen in people who receive INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®. NMS can cause death and must be treated in a hospital. Call your healthcare professional right away if you become severely ill and have any of these symptoms: high fever; severe muscle stiffness; confusion; loss of consciousness; changes in your breathing, heartbeat, and blood pressure.
- problems with your heartbeat. These heart problems can cause death. Call your healthcare professional right away if you have any of these symptoms: passing out or feeling like you will pass out, dizziness, or feeling as if your heart is pounding or missing beats.
- uncontrolled movements of your tongue, face, mouth, or jaw (tardive dyskinesia)
- metabolic changes. Metabolic changes may include high blood sugar (hyperglycemia), diabetes mellitus and changes in the fat levels in your blood (dyslipidemia), and weight gain.
- low blood pressure and fainting
- changes in your blood cell counts
- high level of prolactin in your blood (hyperprolactinemia). INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® may cause a rise in the blood levels of a hormone called prolactin (hyperprolactinemia) that may cause side effects including missed menstrual periods, leakage of milk from the breasts, development of breasts in men, or problems with erection.
- problems thinking clearly and moving your body
- difficulty swallowing that can cause food or liquid to get into your lungs
- prolonged or painful erection lasting more than 4 hours. Call your healthcare professional or go to your nearest emergency room right away if you have an erection that lasts more than 4 hours.
- problems with control of your body temperature, especially when you exercise a lot or spend time doing things that make you warm. It is important for you to drink water to avoid dehydration.
The most common side effects of INVEGA HAFYERA™ include: injection site reactions, weight gain, headache, upper respiratory tract infections, feeling restlessness or difficulty sitting still, slow movements, tremors, stiffness and shuffling walk.
The most common side effects of INVEGA TRINZA® include: injection site reactions, weight gain, headache, upper respiratory tract infections, feeling restlessness or difficulty sitting still, slow movements, tremors, stiffness and shuffling walk.
The most common side effects of INVEGA SUSTENNA® include: injection site reactions; sleepiness or drowsiness; dizziness; feeling of inner restlessness or needing to be constantly moving; abnormal muscle movements, including tremor (shaking), shuffling, uncontrolled involuntary movements, and abnormal movements of your eyes.
Tell your healthcare professional if you have any side effect that bothers you or does not go away. These are not all the possible side effects of INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®. For more information, ask your healthcare professional or pharmacist.
Call your healthcare professional for medical advice about side effects. You may report side effects of prescription drugs to the FDA at 1-800-FDA-1088.
General information about the safe and effective use of INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA®
Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® for a condition for which it was not prescribed. You can ask your pharmacist or healthcare professional for information about INVEGA HAFYERA™, INVEGA TRINZA® or INVEGA SUSTENNA® that is written for healthcare professionals.
Please click to read the full Prescribing Information, including Boxed WARNING, for INVEGA HAFYERA™, INVEGA TRINZA® and INVEGA SUSTENNA® and discuss any questions you have with your healthcare professional.