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How One Mother's Perseverance with Psoriatic Disease Helped Turn Challenge into Purpose

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(BPT) - For those living with plaque psoriasis (PsO) and active psoriatic arthritis (PsA) — known collectively as psoriatic disease[1] — every day can feel like a challenge. From PsO symptoms like painful itchy, burning, and scaly plaques on the skin[2] to joint pain, stiffness, and swelling from active PsA,[3] these conditions are chronic illnesses that can impact many aspects of a person’s life.

Joni is one of the more than 7.5 million Americans currently living with psoriasis,[4] an autoimmune disease that causes inflammation and an overproduction of skin cells. It can appear anywhere on the body, even on the scalp, hands, feet, nails and other areas.

“Before I was diagnosed with psoriasis, I remember thinking I was just having an allergic reaction because it was the beginning of spring,” Joni reflects. “When I went to the doctor and learned it was psoriasis — I realized that this was something I would have to manage for my whole life. I felt very overwhelmed because all I wanted to focus on was being a student and playing sports — not covering up and hiding my body or feeling self-conscious.”

Joni worked with a dermatologist and tried a number of treatments to get her PsO under control. She responded temporarily to some medications, but not for the long term. This caused great frustration for Joni over the years, which drove her to launch her own blog, Just a Girl with Spots, to advocate for others. She uses this platform and social media to raise awareness about active PsA and PsO by sharing information and resources for people living with these conditions, creating a supportive online community to ensure people know they are not alone in their journey with psoriatic disease.

As time went on, Joni began to also experience aches in her feet and hands. It started out feeling like she couldn’t quite get comfortable and like she needed extra time in the morning to get her body moving. About 30% of people with PsO can develop active PsA, and in 2020, Joni’s dermatologist confirmed her active PsA diagnosis.[5]

Faced with this new reality, Joni was determined to work with her doctor on a management plan that could treat her conditions and hopefully provide some symptom relief. As a wife and mother with a busy social life and a number of hobbies, such as fitness, painting and writing, Joni’s active PsA was getting in the way of the things she loves.

“I realized that active PsA was impacting my ability to perform daily activities that I previously took for granted. I have two young daughters and it became difficult to keep up with them and take them to events and activities. There were days I couldn’t even walk and do simple things, like hold a coffee cup or open a jar,” Joni reflects. “With my active PsA symptoms I felt like I was in less control of my own body and that my entire family was impacted as a result.”

Joni spoke with her doctor about how her joint symptoms (joint pain, stiffness and swelling) were interfering with her daily life and she was prescribed a biologic medication called TREMFYA® (guselkumab). TREMFYA® is a prescription medicine approved to treat adults with active PsA.

In two medical studies, more than half of patients treated with TREMFYA® had at least a 20 percent improvement in joint pain, stiffness, and swelling at 24 weeks compared to placebo. Furthermore, 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 a questionnaire. 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 7 days. Active psoriatic arthritis patients treated with TREMFYA® saw an improvement in psoriasis skin plaques at 24 weeks. Individual results may vary.

Since being prescribed TREMFYA® in 2020, Joni experienced less joint pain, stiffness, and swelling and has seen improvements in doing everyday tasks, as well as her active PsA-related fatigue symptoms and an improvement in psoriasis skin plaques. TREMFYA® is a single-dose 100 mg injection taken under the skin at weeks 0 and 4, and then every 8 weeks. TREMFYA® is intended for use under the guidance and supervision of physicians. Patients may self-inject after proper training and physician approval.

“I have been able to fit TREMFYA® into my life,” Joni shares. “After being trained by my doctor during my first injection at the office and after my doctor’s approval, I’ve been able to have it shipped to my house so I can self-administer — something that has now become a family affair as my girls enjoy supporting me.”

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.

You should be instructed to seek medical advice if signs and symptoms of clinically important chronic or acute infection occur. You should also be evaluated for tuberculosis before being treated with TREMFYA®. Ask your doctor if TREMFYA® is right for you. Click here for more information on how TREMFYA® may help. If you've been prescribed TREMFYA® and are looking for support, help is just one step away.

What does life look like for Joni now? Today, she focuses on her physical and mental health and being a wife and mother. She is also still an active advocate for others struggling with active PsA and PsO, sharing information on her blog, on social media, and through chronic disease community platforms.

“When my symptoms started to improve, I felt I was able to do more of what I used to and was given back the opportunity to focus on my daily routines,” Joni reflects. “I’m sharing my story to inspire those that may have a medical condition that can be challenging to diagnose and to encourage those dealing with psoriatic disease and specifically active PsA to seek help from their doctors. You are not alone, and the sooner you talk with your doctor about treatment options, the sooner you can find something that could work for you.”

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Sponsored by Johnson & Johnson

In consideration of the time Joni spent participating in this article, she was paid honoraria by Johnson & Johnson.

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, sweats, 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.
  • 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: upper respiratory 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.

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[1]. Understanding Psoriatic Disease. National Psoriasis Foundation. December 6, 2023. https://www.psoriasis.org/understanding-psoriatic-disease/

[2]. Psoriasis. Mayo Clinic. December 11, 2023. https://www.mayoclinic.org/diseases-conditions/psoriasis/symptoms-causes/syc-20355840#:~:text=Psoriasis%20is%20a%20skin%20disease,make%20it%20hard%20to%20concentrate.

[3]. About Psoriatic Arthritis. National Psoriasis Foundation. December 11, 2023. https://www.psoriasis.org/about-psoriatic-arthritis/#:~:text=Psoriatic%20arthritis%20(PsA)%20is%20a,age%20and%20may%20affect%20children.

[4]. Armstrong AW, Mehta MD, Schupp CW, Gondo GC, Bell SJ, Griffiths CEM. Psoriasis prevalence in adults in the United States. JAMA Dermatol. 2021;157(8):940-946. doi: 10.1001/jamadermatol.2021.2007. PMID: 34190957; PMCID: PMC8246333.

[5]. Psoriatic Arthritis. Cleveland Clinic. October 19, 2023. https://my.clevelandclinic.org/health/diseases/13286-psoriatic-arthritis