Arthritis Life

Living through Diagnostic Purgatory and Rare Medication Side Effects: Rosemary’s Psoriatic Arthritis Story

Episode Summary

In this episode Rosemary, a registered nurse, shares her journey with “diagnostic purgatory,” or the experience of having an unclear autoimmune diagnosis. She also describes the winding tale of how a skin rash ended up being a symptom of a larger rare medication side effect, and how she coped with this challenging and painful experience.

Episode Notes

Rosemary also shares her experience with a mystery skin rash that ended up being a rare psoriatic arthritis medication side effect: leukocytoclastic vasculitis triggered by drug-induced lupus, and an eventual diagnosis of Palisaded Neutrophilic and Granulomatous Dermatitis. 

Throughout the episode, Rosemary and Cheryl discuss the importance of coping skills for difficult medical experiences. They also emphasize the importance of finding the right medications, lifestyle strategies, and the role of psychosocial support. Uncertainty and setbacks can be overwhelming, but self-compassion, support systems, acceptance, and perseverance can help you pursue a fulfilling life despite health challenges.

Episode at a glance:

• Chronic Illness Journey: The interview delves into Emily's journey of living with chronic illnesses, from psoriatic arthritis, to developing drug-induced lupus which triggered leukocytoclastic vasculitis, and eventually being diagnosed with Palisaded Neutrophilic and Granulomatous Dermatitis (PNGD).
• Medication Management: Rosemary shares her experiences with various medications, including Enbrel, Humira, and Plaquenil, discussing their effectiveness in managing her symptoms and the decision-making process involved in discontinuing certain medications. They discuss the importance in recognizing adverse effects, while balancing this understanding with the benefits that medications do provide.
• Lifestyle strategies: Rosemary emphasizes the importance of physical activity and wellness in her life, despite her health challenges.
• Emotional Resilience: Navigating the emotional highs and lows with chronic illness can be overwhelming, from the initial relief of finding treatments to the grief and uncertainty of adjusting plans. Cheryl and Rosemary discuss self-advocacy, and pursuing fulfilling lives despite obstacles .
• Adapting to Change: Rosemary and Cheryl discuss how to adapt to change, both in terms of treatment plans and mindset towards living with chronic illness, including exploring alternative treatments and embracing new perspectives.
• Support: Rosemary reflects on the role of support from healthcare providers, online support groups, and in personal relationships - underscoring the importance of having a strong network when facing chronic illness.
• Advice to Newly Diagnosed Patients: “You don't have control of the fact that that happened to you, and you didn't do anything wrong. All you can do now is choose how to react to it. Do the next right thing. Little by little by little, it'll start coming together. And you're going to be okay.”

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

For full episode details including a transcript

Go to the episode page on the Arthritis Life Website (transcript coming soon!).