Joni’s journey with chronic illness began with what she initially believed to be an allergic reaction, marked by painful, burning red spots. A dermatologist’s evaluation revealed a diagnosis of psoriasis (PsO), an autoimmune condition causing inflamed, rapidly multiplying skin cells that result in itchy, scaly patches on various parts of the body.
Over time, Joni experienced additional symptoms, including aching in her hands and feet and morning stiffness, leading to a diagnosis of active psoriatic arthritis (PsA). She learned that approximately 30% of individuals with PsO develop active PsA, characterized by joint pain, swelling, stiffness, and fatigue, which can significantly impede daily activities like dressing, eating, and walking. Collectively, plaque PsO and active PsA are known as psoriatic disease. While treatable, these conditions currently have no cure.
Joni shared her experiences living with these chronic conditions, the importance of community support, and the impact of finding effective treatment.
Initial Reactions to Diagnoses
Initially overwhelmed by the visible and uncomfortable plaques of PsO, Joni described her diagnosis as the “worst thing that could ever happen.” The subsequent development of joint pain and difficulty with mobility led to her active PsA diagnosis. Balancing her health needs with the demands of raising two young children amplified her concerns, recalling the initial panic of her first diagnosis.
Navigating the Challenges of PsO and PsA
The challenges associated with psoriatic disease have evolved for Joni. Early on, she faced the discomfort of explaining her skin condition to others. The unpredictable nature of her chronic joint pain from active PsA presented a significant physical and emotional toll, particularly as a mother of young children. She continues to grapple with the question of “why me?”
The Treatment Journey
Joni’s search for effective treatment began with topical therapies for her PsO, which were time-consuming and yielded limited results. Upon developing active PsA symptoms, her dermatologist recommended TREMFYA® (guselkumab). TREMFYA® is indicated for moderate to severe plaque psoriasis and active psoriatic arthritis in adults and children aged 6 and older, weighing at least 88 pounds, who may benefit from systemic therapy or phototherapy. The medication is administered every eight weeks after initial starter doses.
Since starting TREMFYA®, Joni has experienced reduced joint pain, stiffness, and swelling, alongside improvements in her ability to perform daily tasks, decreased fatigue, and clearer skin plaques. Clinical studies have shown that TREMFYA® can lead to significant joint improvement and enhanced daily function in patients with active PsA. Individual results may vary.
TREMFYA® is a prescription medication. It is important to discuss with your healthcare provider if TREMFYA® is appropriate for you. Serious side effects, including allergic reactions, infections, and liver problems, can occur. TREMFYA® affects the immune system and may increase the risk of infections. Consult the Important Safety Information and Medication Guide for TREMFYA® for a comprehensive understanding of potential risks.
Tips for Medical Appointments
Joni emphasizes the importance of keeping a detailed log of symptoms and questions to effectively communicate with her dermatologist. She advocates for active patient participation in healthcare decisions, encouraging individuals to ask for clarification and understand the rationale behind treatment choices, as ultimately, the patient is responsible for their own body and treatment regimen.
Raising Awareness for Psoriatic Disease
Joni stresses that PsO is more than a skin condition; it is a painful, itchy, and noticeable autoimmune disease that is not contagious. She highlights the significant self-consciousness it can cause. Both plaque PsO and active PsA are autoimmune diseases that can impact multiple bodily systems, underscoring the need for greater public awareness and understanding of these conditions. Building trust and open communication with healthcare providers has been vital for her support system.
Founding a Patient Community
Driven by a desire to provide the resources she lacked upon diagnosis, Joni launched the blog justagirlwithspots.com in 2012. The platform aims to offer support and share information for individuals with psoriatic disease, ensuring that no one feels isolated on their health journey.
The Power of Sharing Personal Stories
Joni believes that sharing her story helps others realize they are not alone and empowers them to seek support. She aims to be a role model for her daughters, demonstrating resilience and the ability to manage any challenge or disease they may encounter.
For individuals diagnosed with moderate to severe plaque psoriasis or active psoriatic arthritis, treatments like TREMFYA® may offer benefits. Consulting with a healthcare provider and visiting www.TREMFYA.com can provide further information.
Joni received honoraria from Johnson & Johnson for her participation in this article.
INDICATIONS
WHAT IS TREMFYA® (guselkumab)?
TREMFYA® is a prescription medicine used to treat adults and children 6 years and older who also weigh at least 88 pounds (40 kg) with moderate to severe plaque psoriasis who may benefit from systemic therapy or phototherapy.
TREMFYA® is a prescription medicine used to treat adults and children 6 years and older who also weigh at least 88 pounds (40 kg) with active psoriatic arthritis.
TREMFYA® is a prescription medicine used to treat adults with moderately to severely active ulcerative colitis.
TREMFYA® is a prescription medicine used to treat adults with moderately to severely active Crohn’s disease.
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:
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Serious Allergic Reactions. Seek immediate medical attention if you experience symptoms like fainting, dizziness, facial swelling, difficulty breathing, or rash.
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Infections. TREMFYA® can lower your immune system’s ability to fight infections. Tell your healthcare provider immediately if you develop signs of infection, such as fever, chills, cough, or sores on your body.
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Liver Problems. Your healthcare provider will monitor your liver function. Report any symptoms like jaundice, nausea, or abdominal pain to your doctor promptly.
Do not use TREMFYA® if you have a known allergy to guselkumab or its ingredients.
Before starting TREMFYA®, inform your healthcare provider about all your medical conditions, including any history of infections or TB. Discuss any planned vaccinations, as live vaccines are not recommended during treatment. Consult your doctor regarding pregnancy or breastfeeding plans.
Pregnancy Registry: If you become pregnant while using TREMFYA®, speak with your healthcare provider about enrolling in the TREMFYA® pregnancy registry.
Inform your healthcare provider about all medications you are taking, including supplements.
What are the possible side effects of TREMFYA®?
Common side effects include respiratory tract infections, headache, injection site reactions, joint pain, diarrhea, and gastroenteritis. Consult your doctor for a complete list of side effects.
Use TREMFYA® exactly as prescribed by your healthcare provider.
Please review the full Prescribing Information and Medication Guide for TREMFYA® and discuss any questions with your doctor.
Report any adverse side effects to the FDA by visiting www.fda.gov/medwatch or calling 1-800-FDA-1088.
Dosage Forms and Strengths: TREMFYA® is available for subcutaneous injection and intravenous infusion.
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1 About psoriasis. National Psoriasis Foundation. Accessed October 30, 2025. https://www.psoriasis.org/about-psoriasis/
2 Psoriasis. Mayo Clinic. Accessed October 30, 2025. 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 August 7, 2025. Accessed October 30, 2025. 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, 2025. https://www.mayoclinic.org/diseases-conditions/psoriatic-%20arthritis/symptoms-causes/syc-20354076
5TREMFYA® [Prescribing Information]. Horsham, PA: Janssen Biotech, Inc.
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Business Style Takeaway: Understanding chronic conditions like psoriatic disease is vital for personal well-being, impacting daily productivity and long-term health. Proactive management, informed by patient advocacy and effective treatments, is key to maintaining a balanced professional life despite health challenges.
Information compiled from materials : theskimm.com