I am a patient advocate, spokesperson, and panel participant for psoriasis, psoriatic arthritis, joint replacements, and co-morbidities of arthritis and psoriasis. I am a retired healthcare transactional attorney, and I have served or currently serve on the Board of the National Psoriasis Foundation, the American Joint Replacement Registry (a division of the American Academy of Orthopedic Surgery), several National Institute of Arthritis Musculoskeletal and Skin Disease (“NIAMS”) councils and panels, the Institute for Clinical and Economic Research and the Innovation and Value Initiative.

In 1976, I was diagnosed with psoriatic arthritis. I have had total joint replacements of both knees, both hips, and both shoulders, which is highly unlikely for a patient with rheumatoid-like arthritis. Recently, it has evolved into osteoarthritis. In the earliest days, I took what was available, mostly drugs for rheumatoid arthritis -NSAIDs, hydroxychloroquine, gold injections and pills, indomethacin, methotrexate, etc. These drugs would work for a while, and then I would switch, but the choices were limited.

In 1999, I started with biologic drugs, the so-called “TNF inhibitors,” namely etanercept, adalimumab, and infliximab. For me, the first two worked for about two years before they lost effectiveness, so I would switch back and forth. Since a series of Interleukin (“IL”) pathway drugs were FDA-approved starting in 2009, I found one that has cleared my psoriasis, but the effects on my psoriatic arthritis are uncertain since there was so much irreversible damage and destruction before the biologics were introduced.

What I would like researchers to know includes but is not limited to:

• A deeper understanding of pain (intensity, frequency, interference with work, and quality of life) triggers, referred pain, and pain management.
• A need for alternative remedies for psoriasis and arthritis beyond drug discoveries and approvals so far, because of the co-morbidities of psoriatic disease.
• A better understanding of the operation of tissue-resident memory T-cells in the joints and skin, and how to mitigate the impact of those T-cells.
• A better understanding of (1) why certain drugs work for some but not all patients, and (2) why certain drugs work only for a while before they lose effectiveness (beyond the build-up of antibodies to the drugs).
• Development of biomarkers to help shared decision-making between patient and clinician (rheumatologist or orthopedist) as to what drug is best for which arthritis patient.
• Development of algorithms for treatments, etc.