- Susan Grant Duffield, Healdsburg, California
- Age: 63
- Diagnosis: Plaque psoriasis, psoriatic arthritis
- Age diagnosed: 1970s (psoriasis), 2017 (PsA)
- Past treatments: Topical steroids, ultraviolet B phototherapy
- Current treatment: Methotrexate and Remicade (infliximab)
Approximately 30 percent of people with psoriasis are at risk for developing psoriatic arthritis. The two conditions may materialize close together or decades apart. Sue Duffield is an example of the latter.
Duffield spent 20 years as a nurse. “I didn’t have psoriasis that badly when I was a nurse and never on my hands,” she said.
Years after she retired, in November 2015, she noticed a pain in one heel.
“I’d been reading about psoriatic arthritis,” she said. “It’s a classic sign to have enthesitis [inflammation where tendons or ligaments connect to the bone] down in your heel. It’s also classic to have pain in your elbows, and guess what: I have pain in my elbows.”
This was the start of a frustrating period for Duffield. “I kept reading articles, but the doctors didn’t agree with what I found,” she said. “Just because I’m a nurse, that doesn’t make this process easier.”
Finding an ally
At NPF, we believe the best advocate for your own health should be you. To be that advocate, Duffield needed our help.
In May 2016, she contacted the Patient Navigation Center and began working with Patient Navigator Amy Kurtz. Duffield learned from Kurtz that enthesitis wasn’t the only thing her body was doing to signal its distress: the fingernail pitting she had experienced for years may have also been another early warning sign of PsA.
Kurtz urged Duffield to bring the fingernail pitting to her primary care physician’s attention and Kurtz gave her a list of rheumatologists in her area that were also within her insurer’s network.
According to Duffield, once she saw a rheumatologist, she “really listened to me,” but she was looking for the “bony things” indicative of PsA. Duffield had other symptoms, including uveitis (eye inflammation).
Duffield’s rheumatologist prescribed methotrexate. “She felt it would be diagnostic,” Duffield said. “If the methotrexate eased my pain, then we’d know if I had psoriatic arthritis. I didn’t agree.”
The methotrexate cleared her psoriasis and uveitis, and improved the condition of her fingernails. But the joint pain was still there.
Facing down her doubts
“I kept going back to Amy and asking her, ‘Am I nuts? Is this just me?’ It’s so easy to question yourself,” Duffield said.
Her rheumatologist did an MRI of her heel. The podiatrist who evaluated the MRI decided Duffield had “mechanical,” not inflammatory, enthesitis.
“I’ve been misdiagnosed before,” Duffield said. “But even though I am a former health care provider, I had my doubts. Was it really psoriatic arthritis? I kept thinking, ‘I must be wrong, I must be wrong.’”
In mid-February 2017, Duffield finally received her diagnosis of PsA. “I will never know if [my rheumatologist] would have given me the diagnosis that day or not,” Duffield said.
“But I came in with a stack of articles with little markers all over them. I had all these other points of enthesitis. I had fingernail involvement. So she, when pressed, gave me the diagnosis of psoriatic arthritis. She still had reservations, but that was OK with me. As long as I was going to get treatment.”
Duffield’s PsA treatment is Remicade (inflixmab). She credits the help she received from the Patient Navigation Center for this success. “Without Amy, I would’ve given up a long time ago,” she said. “I don’t think I would have had the confidence to pursue this as vigorously if [she] weren’t in my corner. She was a major player in my story.”
Duffield offers this advice to anyone who wants to be their own health advocate: “You can’t just stand up for yourself. You have to scream loudly to be heard. You have to fight like a tiger!”
(If you have questions about PsA or other matters related to psoriatic disease, ask an NPF Patient Navigator.)
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.