August 8, 2022

Empowerment through Diagnosis: Improving Livelihoods for Women Living with Psoriatic Arthritis

Of the more than 8 million Americans with psoriasis, a chronic inflammatory skin disease characterized by patches of red or discolored and irritated skin, an estimated 30% also develop psoriatic arthritis (PsA). PsA is a disease with symptoms similar to rheumatoid arthritis, including joint pain, swelling, discolored and scaly skin patches, and widespread fatigue. While PsA usually occurs equally between men and women, it presents differently in each and studies have suggested that women are more likely to experience polyarthritis (arthritis impacting five or more joints), symptoms in the peripheral joints (arms, hands, feet), more pain, and worse patient-reported responses to treatment. 

On June 22, 2022, SWHR convened a diverse and interdisciplinary working group of health care providers, researchers, patients and patient advocates, and health care policy leaders for a closed, roundtable meeting to discuss the health, social, and economic impacts of PsA on women’s health across the lifespan. The roundtable participants highlighted knowledge gaps and unmet needs in clinical care, education, and policy that could be addressed in order to improve the livelihoods of women living with PsA. 

Diagnosing Psoriatic Arthritis 

There are many pathways to a PsA diagnosis, from joint pain and inflammation to skin irritation and rashes. While there is currently no diagnostic test for PsA, warning signs may include morning joint stiffness that improves with exercise, joint pain, and fatigue. Among the challenges of PsA diagnosis—and diagnoses for other diseases and health conditions broadly—for women in particular is that their pain is often overlooked by providers when compared to men’s pain.  

Because the symptoms of PsA may be caused by a variety of conditions, it can be difficult to come to a diagnosis quickly. Additionally, women may minimize their pain or chose not to mention joint symptoms during clinical encounters, making it difficult to identify a connection between related symptoms. Women with PsA face a diagnostic delay of 8.8 years, more than two years longer than men (6.5 years), and are more likely to be referred to other specialists before they receive a diagnosis. These delays can be detrimental to future health as a timely diagnosis of PsA is critical to avoid irreversible joint damage. 

Many PsA patients share initial symptoms with their primary care provider or dermatologist, and may then be referred to a specialist for a diagnosis, such as a rheumatologist. Given the current rheumatologist shortage in the United States—an issue that is expected to grow in the coming years—dermatologists can also be crucial to diagnosing PsA because psoriasis usually develops first in in the skin, said Alexa Meara, MD, rheumatologist and Assistant Professor at Ohio State University. Improved medical education may help increase psoriasis and PsA awareness in the dermatologic field, and ideally reduce diagnostic delays. Additionally, Dr. Meara would like to see more providers practice patient-centered care. In her appointments, she asks a wide range of questions to best inform the diagnosis and treatment of PsA, starting with “Are you able to do everything you want to do, and if not, why?” which offers patients the opportunity to share other crucial details, symptoms, or concerns that may have not come up otherwise. 

Expanding Research to Better Support Psoriatic Arthritis 

Of the millions of people in the United States with PsA, disease prevalence between men and women is largely equal. However, recent large database studies are beginning to show a greater disease slant towards women, as reported by Dr. Meara and Lihi Eder, MD, PhD, Associate Professor of Medicine and Clinician Scientist at Women’s College Hospital, University of Toronto. This possible sex difference presents a research gap in the field of PsA.  

There is limited data on the effects of PsA medications on health during pregnancy or childbearing years, and additional research is needed to understand how hormones and life stages like puberty, pregnancy, and menopause affect a PsA diagnosis generally. For example, PsA symptoms in an older woman may be dismissed as typical for her life stage and therefore go undiagnosed. Despite the lack of research, Elizabeth Medeiros, a PsA patient advocate and blogger, is eager to learn how to manage PsA as she ages:

“I want to see more hormone specific research, I want to hear more about resources for symptoms other than pain, like fatigue or bone density. There’s so much we don’t know.” 

Other areas of need include the fact that women are less likely to develop changes from PsA that are visible over X-ray and that psoriasis is often under-diagnosed among African Americans and individuals with skin of color due to differences in clinical presentation, likely resulting in a subsequent under-diagnosis of PsA as well. Research topics of interest that were of particular interest to working group members included understanding the right drug for each presentation of the disease; increasing knowledge around possible biomarkers for PsA (including creating more sensitive tests to address diagnostic delays and separate between PsA and osteoarthritis – a common misdiagnosis of  PsA, especially in older patients); measurements of pain types and severity caused by PsA; investigations into the ways sex and gender influence PsA outcomes; trials for PsA treatments that exhibit greater efficacy and match the positive outcomes seen in psoriasis treatment and remission rates. 

Every Day with Psoriatic Arthritis 

Medeiros’s PsA journey began early, when she was hospitalized at age 8 due to an arthritis flare up. After years of seeing experts, she was diagnosed with PsA at age 14 – in part after a doctor noticed her pitting nails. The treatment she received helped relieve her symptoms, but she still faces struggles daily due to her PsA diagnosis. Today, Medeiros is an outspoken patient advocate and author of The Girl with Arthritis blog, with a strong team of family, friends, and professionals behind her. Medeiros says that part of her success has been due to a stellar medical team. The physicians involved in an individual’s care will depend on their unique needs, but may include a primary care provider, rheumatologist, dermatologist, endocrinologist, therapist, oral surgeon, nutritionist, psychiatrist, OB/GYN, and urologist. “My biggest tip would be to build a good team, and if you can, try to a find a doctor specific to PsA,” Medeiros said. Read more about Medeiros’s journey on the SWHR blog. 

Diane Talbert, patient advocate and senior collateral specialist at Power Beyond Psoriasis, had psoriasis at age 5. Although she started seeing PsA symptoms at age 25, she was not diagnosed with PsA until age 50. 

No one can see the throbbing pain, the 17 pills she takes a day to function, or the isolation of having this disease, Talbert shared.  

Talbert has lived with chronic pain for so much of her life that she finds herself hesitating to share her experience day-to-day with friends and family members, because she doesn’t want to bother people with how she feels and start to sound like a broken record, she said. Even so, Talbert maintains hope, regularly speaks with — and listens to — community members affected by PsA, and visits Washington D.C. each year to advocate for research to improve treatments for the disease.  

PsA can have significant impacts on quality of life, but Talbert and Medeiros, like many with PsA, have learned to thrive. Talbert finds great support in her husband, and Medeiros takes advantage of flexible working accommodations. Approximately 40% of people with PsA report that the disease is a large problem in their everyday life, and studies show women often experience more fatigue and functional limitations, and are less likely to respond to some treatments and achieve remission than men.  

As women age, the effects of PsA can appear differently. Pregnancy while living with PsA presents its own challenges. Dr. Eder shared that studies have shown that women with PsA have higher rate of cesarian section deliveries and preterm births. Other studies suggest a higher rate of gestational diabetes in women with PsA. After menopause, women with PsA are at an increased risk to develop comorbidities such as fibromyalgia, cardiovascular disease, and Crohn’s disease.  

Treating Psoriatic Arthritis 

Treatments for psoriasis are often effective, but when treating PsA, one must address both the skin and joints. Treatments for PsA may be oral, topical, or biologics—depending on which is used, the long-term safety and efficacy may differ. A patient’s comorbidities may impact treatment, and data shows that women are more likely to switch therapies due to efficacy and adverse effects than men, said Quardricos B. Driskell, MPP, Vice President of Public Policy and Government Affairs at the Autoimmune Association. Finding an effective treatment can also be delayed by a process called “step therapy”, a strategy used by health insurers where prescribed treatment for a medical condition is first authorized for a lower-cost treatment and then progresses “step-wise” to other therapies, if needed; this approach is sometimes called “fail first” because patients must try and “fail” lower-cost treatments before gaining access to the treatment their clinician originally prescribed.  

Treatment for PsA must also consider the mental health aspect of living with a chronic disease. Individuals with PsA are at an increased risk of depression and anxiety and may find themselves avoiding social interactions. Finding ways to support quality mental health through the ups and downs of PsA is important. Talbert describes a mental breakdown for her as when her body is aching, she begins to get over-stressed and starts to experience headaches, irritability, frustration, and overall anxiety. She’s learned to take it one day at a time when this happens.  

To help manage PsA, Talbert and Medeiros suggest tracking symptoms. While personal trackers are useful, Medeiros wishes some health apps better tracked a wider set of health analytics like flare day frequency, length, and solutions; new medications; fatigue levels; and had the ability to integrate with online medical portals so they can serve as a tool and reference point during physician conversations. While some resource apps and PsA education sites were mentioned  (GRAPPA app, Global Healthy Living, Mother To Baby, and BezzyPsA), working group members agreed that more comprehensive PsA materials are always welcome.  

Improving Psoriatic Arthritis Awareness  

Working group members agreed that there are several steps that can be taken to improve the lives of those living with PsA. From a policy perspective, there are research, access, and awareness measures that can be implemented to improve outcomes. Not only can policymakers ensure robust and sustained research funding for PsA, but policymakers can also help address barriers to treatment, including access, prescription delays, and psychiatrist support system coverage. 

The current care system must be also improved to center and empower patients to be advocates for themselves, said Driskell. This includes providing educational tools and resources and encouraging patients to advocate for their needs and help educate their providers on where gaps persist. Many working group members echoed the importance of this patient-centric and empowerment mindset. “Education helps you stand on a level playing field with your care team,” Medeiros added.  

It will take the work of experts and advocates across the health care ecosystem to improve outcomes for PsA, but solutions are within reach — spanning psoriasis care, patient empowerment, and collaboration across specialties and policymakers. SWHR will continue searching for opportunities to build awareness, advance research, and improve science-based clinical and policy guidelines to improve the well-being for women living with PsA.  

SWHR published a Diagnosis and Management in Primary Care Fact Sheet for PsA in 2021 and will publish a PsA toolkit in 2022 that provides additional resources for women and the communities affected by PsA in fall 2022.  


SWHR’s Psoriatic Arthritis is supported by an educational sponsorship from by Eli Lilly & Company. SWHR maintains editorial control and independence over educational content.