When Joni developed red, painful, burning spots on her skin, she went to see her doctor assuming it was an allergic reaction. Her doctor recommended that she see a dermatologist to rule out whether something else was going on. Joni was eventually diagnosed with psoriasis, or PsO.
Plaque PsO is an autoimmune disease that causes inflammation and an overproduction of skin cells.1 Symptoms include painful, itchy, burning, scaly patches that can appear anywhere on the body, including the scalp, hands, feet, and nails.2
Over time, she noticed other changes. Her hands and feet started to ache. She found it difficult to get comfortable and to get her body moving in the morning. Joni was diagnosed with active psoriatic arthritis, or active PsA. She was surprised to learn that roughly 30% of people with PsO can develop active PsA, which can cause joint pain, stiffness, swelling, and even fatigue.3 As with some chronic conditions, active PsA can make it challenging to accomplish day-to-day tasks, like getting dressed, eating, and walking.4 Plaque PsO and active PsA are collectively known (or referred to) as psoriatic disease. While both diseases can be treated, unfortunately, there is no cure.2
We talked to Joni about living with these diseases, the community she has created to help others with psoriatic disease feel less alone, and how finding an appropriate treatment has helped her.
How did you react to your diagnoses?
I wasn't super confident to begin with, so when my skin became covered in red, painful plaques, I panicked. My skin felt like it was burning. I was intensely uncomfortable. When I was first diagnosed with PsO, it honestly felt like the worst thing that could ever happen to me.
As time went on, I started experiencing a lot of joint pain that I didn’t know how to handle. Some days, it was hard for me to get out of bed. In August 2020, I made an appointment with my dermatologist, and after sharing more about my joint symptoms, I was diagnosed with active PsA. At the time, my daughters were three and five, which required a lot of physical activity. It took me back to how I felt when I was diagnosed with PsO and I began to panic because now I had a family that was counting on me.
What’s the most challenging part about living with PsO and active PsA?
The challenges have changed over the years. Before I had my PsO under control, I always had to explain my plaques to people who didn’t know about the disease, which was uncomfortable for me.
The chronic joint pain from my active PsA was physically taxing because my symptoms are unpredictable. This was extremely difficult to handle as a mom of young children. To date, I still wonder, “Why did this happen to me?”
Tell us about your treatment search.
With PsO, I was always searching for the latest topical treatments. Applying the topicals was draining and time consuming. And to make matters worse, I didn’t see the results I was hoping for.
When I started to experience active PsA symptoms, my dermatologist suggested I try TREMFYA® (guselkumab). TREMFYA® is a prescription medicine used to treat adults with active PsA.5 TREMFYA® is also a prescription medicine used to treat adults with moderate to severe plaque PsO who may benefit from taking injections or pills (systemic therapy) or phototherapy (treatment using ultraviolet or UV light).5
When on treatment with TREMFYA®, I experienced less joint pain, stiffness, and swelling and saw an improvement in everyday tasks. I also saw an effect on my active PsA–related fatigue and an improvement in psoriasis skin plaques. The treatment is once every eight weeks (after two starter doses at week 0 and 4),5 which is manageable for me as a busy mom of two.
In two active PsA medical studies, more than 5 out of 10 patients treated with TREMFYA® had at least a 20% improvement in joint pain, stiffness, and swelling at 24 weeks compared with placebo.5 Additionally, at 24 weeks, people taking TREMFYA® showed an overall improvement in their ability to perform daily activities such as getting dressed, eating, and walking, which was assessed in Disability Index of Health Assessment Questionnaire (HAQ-DI).5 Some patients also reported improvement in PsA-related fatigue at 24 weeks as measured by the Functional Assessment of Chronic Illness Therapy — Fatigue (FACIT-F), a questionnaire to measure self-reported tiredness, weakness, and difficulty conducting usual activities due to fatigue over the last seven days.5 Furthermore, patients with active PsA who were treated with TREMFYA® saw an improvement in psoriasis skin plaques at 24 weeks.5 Individual results may vary.
TREMFYA® is not for everyone; only your doctor can decide if it’s right for you. Do not use if you are allergic to TREMFYA®. TREMFYA® is a prescription medicine that may cause serious side effects, including serious allergic reactions and infections. TREMFYA® affects your immune system. It may increase your risk of infections and lower your ability to fight them. Please read the Important Safety Information below and the Medication Guide for TREMFYA® available at www.tremfya.com to learn more about these and other risks for TREMFYA®. Discuss any questions you have with your doctor.
What advice do you have when it comes to navigating medical appointments?
I keep a running list of my active PsA symptoms and any questions that I have. Having that information written down makes it easier to remember to share things with my dermatologist. That way, I can say, “I want to take you through how my symptoms have been, how I’ve been feeling, and some of the questions I have.”
Also, be your own advocate. If your health care team is explaining something that you don’t understand, ask them to clarify. Always ask why treatment decisions are being made, because at the end of the day, it’s your body and you’re the one taking the treatment.
What do you wish more people knew about PsO and active PsA?
With PsO, it's not just a skin thing, it's not a cosmetic issue and it’s not contagious. It's painful. It's itchy. The symptoms are uncomfortable and noticeable. I was really self-conscious about my flaky skin and would spend hours in the morning picking at it, hoping no one would notice and judge me.
Plaque PsO and active PsA are both autoimmune diseases, and they can affect many parts of your body.1 There are other stressors on top of the physical symptoms, and I wish there was more awareness and understanding of these two conditions. For me, becoming an advocate and developing a relationship with my doctor based on trust and open communication played an important part in getting the support I needed.
What inspired you to start a community for people with plaque PsO and active PsA?
I wanted to create the kind of resource that I needed when I was first diagnosed. At that time, if you Googled “plaque PsO” or “active PsA,” it was all medical websites with the same information. I had to learn through trial and error about things that can help me with my condition.
So, in 2012, I launched a blog called justagirlwithspots.com. The goal of it really is to provide resources and support to others who are having a similar experience with psoriatic disease. It's about making sure that nobody who's living with plaque PsO or active PsA feels alone in this journey.
Why is it important for you to share your story?
It helps people realize that they're not alone. In talking about my experience, hopefully I can empower others to share theirs or seek the support that they need.
I want to be an example to my daughters. One day, they may have to deal with similar conditions, and I want them to know that they can be empowered to manage any disease or any obstacle. You can get through this.
Psst...if you or a loved one have been diagnosed with moderate to severe plaque psoriasis or active psoriatic arthritis, treatments such as TREMFYA® can help. Talk to your doctor and visit www.TREMFYA.com to learn more.
In consideration of the time Joni spent participating in this article, she was paid honoraria by Johnson & Johnson.
INDICATION
WHAT IS TREMFYA® (guselkumab)?
TREMFYA® is a prescription medicine used to treat adults with moderate to severe plaque psoriasis who may benefit from taking injections or pills (systemic therapy) or phototherapy (treatment using ultraviolet or UV light).
TREMFYA® is a prescription medicine used to treat adults with active psoriatic arthritis.
TREMFYA® is a prescription medicine used to treat adults with moderately to severely active ulcerative colitis.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about TREMFYA®?
TREMFYA® is a prescription medicine that may cause serious side effects, including:
Serious Allergic Reactions. Stop using TREMFYA® and get emergency medical help right away if you develop any of the following symptoms of a serious allergic reaction:
fainting, dizziness, feeling lightheaded (low blood pressure)
swelling of your face, eyelids, lips, mouth, tongue or throat
trouble breathing or throat tightness
chest tightness
skin rash, hives
itching
Infections. TREMFYA® may lower the ability of your immune system to fight infections and may increase your risk of infections. Your healthcare provider should check you for infections and tuberculosis (TB) before starting treatment with TREMFYA® and may treat you for TB before you begin treatment with TREMFYA® if you have a history of TB or have active TB. Your healthcare provider should watch you closely for signs and symptoms of TB during and after treatment with TREMFYA®.
Tell your healthcare provider right away if you have an infection or have symptoms of an infection, including:
fever, sweat, or chills
muscle aches
weight loss
cough
warm, red, or painful skin or sores on your body different from your psoriasis
diarrhea or stomach pain
shortness of breath
blood in your phlegm (mucus)
burning when you urinate or urinating more often than normal
Do not take TREMFYA® if you have had a serious allergic reaction to guselkumab or any of the ingredients in TREMFYA®.
Before using TREMFYA®, tell your healthcare provider about all of your medical conditions, including if you:
have any of the conditions or symptoms listed in the section “What is the most important information I should know about TREMFYA®?”
have an infection that does not go away or that keeps coming back.
have TB or have been in close contact with someone with TB.
have recently received or are scheduled to receive an immunization (vaccine). You should avoid receiving live vaccines during treatment with TREMFYA®.
are pregnant or plan to become pregnant. It is not known if TREMFYA® can harm your unborn baby.
Pregnancy Registry: If you become pregnant during treatment with TREMFYA®, talk to your healthcare provider about registering in the pregnancy exposure registry for TREMFYA®. You can enroll by visiting www.mothertobaby.org/ongoing-study/tremfya-guselkumab, by calling 1-877-311-8972, or emailing MotherToBaby@health.ucsd.edu. The purpose of this registry is to collect information about the safety of TREMFYA® during pregnancy.
are breastfeeding or plan to breastfeed. It is not known if TREMFYA® passes into your breast milk.
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 TREMFYA®?
TREMFYA® may cause serious side effects. See “What is the most important information I should know about TREMFYA®?”
The most common side effects of TREMFYA® include: respiratory tract infections, headache, injection site reactions, joint pain (arthralgia), diarrhea, stomach flu (gastroenteritis), fungal skin infections, herpes simplex infections, and bronchitis.
These are not all the possible side effects of TREMFYA®. Call your doctor for medical advice about side effects.
Use TREMFYA® exactly as your healthcare provider tells you to use it.
Please read the full Prescribing Information, including Medication Guide, for TREMFYA® and discuss any questions that you have with your doctor.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Dosage Forms and Strengths: TREMFYA® is available in a 100 mg/mL prefilled syringe and One-Press patient-controlled injector for subcutaneous injection, a 200 mg/2 mL prefilled syringe and prefilled pen (TREMFYA® PEN) for subcutaneous injection, and a 200 mg/20 mL (10 mg/mL) single dose vial for intravenous infusion.
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1 About psoriasis. National Psoriasis Foundation. Accessed October 30, 2024. https://www.psoriasis.org/about-psoriasis/
2 Psoriasis. Mayo Clinic. Accessed October 30, 2024. https://www.mayoclinic.org/diseases-conditions/psoriasis/symptoms-causes/syc-20355840#:~:text=Psoriasis%20is%20a%20skin%20disease,make%20it%20hard%20to%20concentrate
3About psoriatic arthritis. National Psoriasis Foundation. Updated February 16, 2024. Accessed October 30, 2024. https://www.psoriasis.org/about-psoriatic-arthritis/#:~:text=Psoriatic%20arthritis%20(PsA)%20is%20a,age%20and%20may%20affect%20children
4 Psoriatic arthritis. Mayo Clinic. Accessed October 30, 2024. https://www.mayoclinic.org/diseases-conditions/psoriatic-%20arthritis/symptoms-causes/syc-20354076
5TREMFYA® [Prescribing Information]. Horsham, PA: Janssen Biotech, Inc.
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