Putting a Face to the Disease: Tami Seretti, Psoriasis & Psoriatic Arthritis
Patients experience all kinds of emotions when diagnosed with psoriasis. These feelings only evolve as patients learn to manage their new lifestyle, medication regimen, and unexpected obstacles. Tami Seretti is patient advocate for the National Psoriasis Foundation (NPF) and also the 50-State Network. Tami was diagnosed with psoriasis in 1996, and psoriatic arthritis (PsA) in 2008.
Renee Baiano, PharmD, CSP, clinical program manager at AllianceRx Walgreens Pharmacy, interviewed Tami about her journey with psoriasis and PsA, including how she felt when she was diagnosed, what it’s like living with psoriasis, the role of the specialty pharmacy, and more.
The Impact of Diagnosis
How did you feel when you were diagnosed?
Psoriasis was a truly shocking diagnosis. I had never even heard of it. All I knew was that I had thick scales all over my scalp, my hair was falling out, and I was so itchy! I felt dirty and gross. Then I found out that I also had inverse psoriasis under my arms, in my groin, belly button and ears. It was unbearable itching and burning. It was also very painful, and very emotionally draining.
When I was finally diagnosed with PsA, it was a mixed reaction – I had been having symptoms for a number of years, so it was a relief that I finally had a reason for all my pain. On the other hand, it was so scary, as I had trouble even walking or holding a fork. I had recently had to close my own gift basket business due to the pain in my hands and fingers, so it was truly life changing for me.
What impact does psoriasis have on your daily life?
Psoriasis is a major part of my daily life. I have lost my hair a number of times due to scalp psoriasis, and it is no fun being bald – especially when your scalp is covered in thick scales. Inverse and genital psoriasis are so painful, and mentally debilitating. Not being able to wear pants is very limiting and isolating.
Failing medications is also so devastating. I have permanent joint damage in my spine and hands. I have had both carpometacarpal (CMC or basal thumb) joints replaced and have had two series of neurotomies (surgical cutting of a nerve to relieve pain) on my cervical, lumbar and sacroiliac joints in my spine. Psoriasis is a daily struggle.
Managing Therapy
Do you feel your medication helps improve your quality of life?
My current medication has been life changing. After failing seven biologics and two oral medications, my current oral med has reduced my psoriasis coverage from 85% of my body to 15%. I have long hair for the first time in my life, and no new joint damage for the last 2½ years. It has been amazing!
What would you tell someone who is scared to start taking psoriasis medication?
Psoriasis does not just “go away.” It also comes with a slew of comorbidities. It is not a skin disease, so although topical medications can clear up plaques, they do not stop the inflammation that causes the disease.
It goes way beyond the skin, and medication can be absolutely life changing. Not every medication works for every person, though. Sometimes it can be trial and error to find what works. It is important to work with your provider until you find what works, even though it can be frustrating.
How the Specialty Pharmacist Can Help
How can a specialty pharmacist help psoriasis patients stay on therapy?
A specialty pharmacist who can help with side effects and is knowledgeable about the disease and medications can be so helpful. I would also recommend patients ask for non-child resistant bottle caps, if appropriate, for oral medications, as they can be very difficult for patients with arthritis or hand psoriasis to open. This can make it difficult to stay on track with medications.
What should pharmacy staff know when talking to psoriasis patients?
People who live with psoriasis or PsA may be very overwhelmed, and frequently frustrated with failing previous medications, opening bottles, and giving ourselves injections. We frequently feel dirty, ugly and “less than,” and deal with the stigma of visible disease every day. Frequently, we find that we haven’t been given complete information from our doctor, and we may be nervous or afraid; a pharmacy team that is empathetic and knowledgeable about psoriasis can do a lot to calm our fears and help us stay on track with our medications.
What would you tell someone who was recently diagnosed with psoriasis?
Psoriasis is not who you are, it is what you have. It is not curable, but it can be controlled. You need a good dermatologist who knows it well, and your specialty pharmacist can help support you throughout your treatment journey as well. You are not “less than,” you are not ugly, and you are not damaged goods. With treatment and support, you can live your best life.
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