In this episode of The Psoriatic Arthritis Club, host Shelley Fritz talks with Mini, who shares her journey living with Axial Spondyloarthritis (axSpA) — from decades of unexplained pain and delayed diagnosis to finally finding the right care team and treatment.

Mini opens up about what it means to live with daily inflammation, the emotional and physical toll of feeling dismissed, and how she learned to advocate for herself and her care. Her message is clear: “Fine is not fine.” Speaking up and finding a doctor who truly listens can change everything.

Listen now to learn how open communication and self-advocacy can help people living with axSpA reclaim control over their health and well-being.

Contact Our Host

Shelley Fritz, Patient-Centered Engagement and Insights Manager at the Global Healthy Living Foundation: [email protected] 

A podcast series produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments or questions to [email protected]

The Psoriatic Arthritis Club is a podcast series produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints, and this episode was made possible with support from UCB.

Learn more at creakyjoints.org/psoriatic-arthritis-club 

See omnystudio.com/listener for privacy information.

Psoriatic arthritis (PsA) and psoriasis (PsO) are often misunderstood, leading to widespread myths that can make managing these conditions even more challenging. In this episode, patient advocate Jody Quinn joins host Shelley Fritz to set the record straight. From the misconception that PsA is just mild joint pain to the belief that only older adults are affected, Jody shares her personal journey and lived experiences to debunk these common myths.

Whether you're living with PsA or supporting someone who is, this episode offers valuable insights to help you navigate the condition with confidence.

Contact Our Host

Shelley Fritz, Patient-Centered Engagement and Insights Manager at the Global Healthy Living Foundation: [email protected] 

A podcast series produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments or questions to [email protected]

The Psoriatic Arthritis Club is a podcast series produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints, and this episode was made possible with support from Takeda.

Learn more at creakyjoints.org/psoriatic-arthritis-club 

See omnystudio.com/listener for privacy information.

In this episode, Dr. Khattri, a triple board-certified dermatologist, rheumatologist, and internist, discusses the complexities and goals of achieving remission in Psoriatic Arthritis (PsA) and Axial Spondyloarthritis (axSpA). Dr. Khattri explains the concept of minimal disease activity, and the various measures to assess disease activity. The discussion also highlights the importance of patient-clinician collaboration, regular assessments, and addressing comorbidities for holistic care. Dr. Khattri emphasizes shared decision-making and tailoring treatment plans to patient needs and expectations.

Contact Our Host

Shelley Fritz, Patient-Centered Engagement and Insights Manager at the Global Healthy Living Foundation: [email protected] 

A podcast series produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments or questions to [email protected]

The Psoriatic Arthritis Club is a podcast series produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints, and this episode was made possible with support from UCB.

Learn more at creakyjoints.org/psoriatic-arthritis-club 

See omnystudio.com/listener for privacy information.

Whether you're newly diagnosed, suspect you have PsA, or are experiencing worsening symptoms, this guide will help you prepare for more effective doctor visits to discuss treatment and improve your quality of life.

Contact Our Host

Angela Degrassi, Research Manager for Patient-Centered Research at the Global Healthy Living Foundation: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

This episode features rheumatologist Dr. Eric Ruderman discussing PsA management. He emphasizes patient-doctor collaboration and individualized treatment. The episode also delves into lifestyle factors and the latest PsA research and treatments.

"It's a coordinated effort between myself, the dermatologist and the patient to try to figure out what's the best management strategy for that particular person taking into account all the aspects of disease that bother them the most," says Dr. Ruderman.

Among the highlights in this episode:

3:06: Dr Ruderman shares that treating psoriatic arthritis is challenging because there are many different aspects of the disease and not every patient experiences the condition in the same way

4:41: Changes in skin and joint pain can be indicators that it’s time to make a change in medication. Dr. Ruderman shares how he talks to patients about making the decision to change

6:33: It’s normal for people to be hesitant to try a new medication. Hear what Dr. Ruderman says to patients that are concerned about medication side effects and how he guides the discussion to make sure patients are informed

8:18: Dr. Ruderman shares what information is helpful for PsA patients to share with their doctor during an appointment

10:46: Tracking symptoms over time can be helpful information that can be used by doctors and patients to make decisions about treatment

12:03: Angela, the host, and Dr. Ruderman talk about lifestyle changes, such as diet and exercise, that may be complementary to PsA treatment

17:03: Dr Ruderman shares that it’s really challenging not knowing what treatment will work for each individual. He talks about how to tell if a treatment is working and when it’s time to explore other options

19:07: If your disease is under control, Dr. Ruderman recommends physical therapy for some patients

20:32: Hear what Dr. Ruderman wants all PsA patents to know about living with this condition

23:29: Ashley, a patient living with PsA, asks Dr. Ruderman about the latest research

25:26: Jon, A patient living with PsA, asks Dr. Ruderman about his strategy for knowing when it’s time to change medications

Contact Our Host

Angela Degrassi, Research Manager for Patient-Centered Research at the Global Healthy Living Foundation: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

Jonathan Arora talks openly about his journey from diagnosis to treatment. He addresses his initial hesitation due to concerns about drug safety and side effects, offering insights into overcoming these fears and finding community.

Among the highlights in this episode:

3:16: Scaly skin was the major symptom that prompted Jon to talk to his doctor about treatment. After attending a seminar where he learned about treatment options and drug safety, he finally felt comfortable enough to start medication for his psoriatic arthritis.

4:58: Becoming immune-compromised and having to depend on medication for the rest of his life were Jon’s main hesitancies for starting medication. Hear what he did to shift his mindset and get comfortable with his treatment journey.

6:24: Jon’s talks about his first oral biologic band what prompted him to explore different treatment options.

8:08: Jon talks about the drastic change in his symptoms after making a change to a new treatment.

10:53: Jon talks about waking up up with flares, despite his treatment working well.

12:20: Jon shares how getting support from friends, family, and the PsA online community helps him immensely.

16:23: Jon’ details how his view of his psoriasis plaques has evolved since he was first diagnosed. While he used to cover them, he now prioritizes comfort by opting for short sleeves and shorts in hot weather.

18:32: Jon shares his advice for someone that is newly diagnosed.

19:39: Pushing for a referral to a specialist, such as a rheumatologist or dermatologist is one of Jon’s best pieces of advice for self advocacy.

21:09: Dr. Ruderman chimes in, emphasizing that it’s important to push for referral to see a specialist if you are not getting results from your general practitioner

22:45: Jon shares a relatable anecdote about a friend urging him to apply oil from canned fish on his psoriasis plaques.

Contact Our Host

Angela Degrassi, Research Manager for Patient-Centered Research at the Global Healthy Living Foundation: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

Ashley Krivohlavek discusses her challenging journey to find the right PsA treatment. She talks candidly about her initial fears of starting treatment and her concerns through seven treatment changes, weighing the potential side effects against her quality of life.

Among the highlights in this episode:

5:16: Ashley Krivohlavek shares what it was like to wake up one morning and know it was time to make her first appointment with a rheumatologist.

7:21: Dr. Ruderman, an expert rheumatologist, weighs in on the key hallmarks of inflammatory arthritis that signal it’s time to start exploring Treatment decisions

9:01: Ashley shares her journey to get diagnosed with psoriatic arthritis.

10:33: Ashley talks about the difficulty of starting treatment with an oral medication that caused stomach issues, and shares what she did about.

11:45: Ashley reveals what was going through her mind when she was resisting starting a biologic to treat her PsA and talks what ultimately convinced her to start treatment.

14:57: Ashley uses an app called ArthritisPower to track her symptoms and treatment so she can collaborate with her rheumatologist to make better informed decisions about treatment.

17:05: Ashely shares what it’s like to make the difficult decision to make the switch from infusion therapy to an injectable.

19:32: Ashley describes what it’s like to have a flare and what she does to take care of herself during these times.

23:04: Ashley talks about building an online community for support.

Contact Our Host

Angela Degrassi, Research Manager for Patient-Centered Research at the Global Healthy Living Foundation: [email protected]

We want to hear what you think. Send your comments, or a video or audio clip of yourself, to [email protected]

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

Eddie’s PsA story involves a relatively quick journey to getting diagnosed and on treatment. But he’s had his share of challenges along the way, and that means plenty of wisdom to impart about the many curveballs that PsA can throw your way. “If you don’t say something, then nothing’s going to change,” Eddie says. “[Doctors are] wonderful people. But clairvoyance is not something that is taught in med school.”

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Diane should have been diagnosed with PsA well before she actually was. As a woman of color who grew up poor, she endured decades of inadequate treatment, misdiagnosis, and stigma. But she also learned a lot about how to turn things around and advocate for better care. “Someone told me a bunch of years ago, you have a voice, use it,” Diane says. “That had to be the best advice ever. Use your voice.”

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Imagine exercising for a living, then being diagnosed with a condition that makes picking up weights almost too painful to bear. When Lauren was diagnosed with PsA, she had a lot of concerns about what it would mean for her professionally (as a trainer) and personally (as a mom of young children). “As a personal trainer, I can’t just tell people to work out,” Lauren says. “I have to live the lifestyle that I preach. However, if I am flaring, it is hard, and I have to really listen to my body and know what I can handle.”

See omnystudio.com/listener for privacy information.