From healthcentral.com
It’s not always easy living with PsA–but these stories prove that you can still live well with this chronic condition
Psoriatic Arthritis (PsA) is a type of arthritis that affects roughly 30% of the 125 million people worldwide living with psoriasis (PsO), an inflammatory autoimmune condition that triggers itchy plaques, rashes, and swollen, hot skin, according to the National Psoriasis Foundation (NPF).
Some people develop both conditions within a short timeframe, while others have PsO for years before developing PsA (or vice versa), per the NPF. The right treatment plan for PsA can manage both conditions and minimize disease-driven inflammation that can lead to related health concerns including heart attack, stroke, type 2 diabetes, high cholesterol, inflammatory bowel disease, depression, and anxiety.
Many people who have both PsA and PsO go through a trial-and-error phase to find the best medication (or combination of meds) for their specific symptoms—and the good news is, there are currently many effective treatment options available. Certain lifestyle changes, too, have been shown to help reduce PsA and PsO symptoms, including maintaining a healthy weight and minimising stress.
Even so, landing on the right, reliable treatment plan that controls your specific symptoms can be filled with ups and downs, both emotional and physical, especially right after a diagnosis or when psoriatic arthritis symptoms first flare. For been-there, done-that, “here’s-what-I-did” advice, we talked to four people with PsA about the turning point that helped them not just live with a chronic condition, but thrive with one.
A PsA Advocate Emerges
Despite having psoriasis since childhood, it took Emily Kate Hertzberg, an art teacher in Long Island, NY, two years to get diagnosed with psoriatic arthritis after she developed joint pain. “I went to this orthopaedic doctor, and he was like, ‘You have tennis elbow … this is an injury from sports,’” she recalls. Hertzberg switched doctors when her symptoms continued to get worse—and was shocked to find out that she had PsA, a disease she’d never even heard of before. “It was really scary to be in my early twenties and not have any idea about this new condition that I was going to have for the rest of my life,” she says. Now 40, Hertzberg recalls researching PsA online, but not much information was available back then, nor were there many treatment options. In her quest for a medication that would treat her PsA, she was hospitalized for a “severe” allergic reaction to the biologic adalimumab after taking it for two years. After her first infusion of a tumour necrosis factor (TNF)-alpha blocker she had an allergic reaction and was treated with Benadryl. “The first couple of years were really, really hard,” she remembers.
Now 40, Hertzberg recalls researching PsA online, but not much information was available back then, nor were there many treatment options. In her quest for a medication that would treat her PsA, she was hospitalized for a “severe” allergic reaction to the biologic adalimumab after taking it for two years. After her first infusion of a tumour necrosis factor (TNF)-alpha blocker she had an allergic reaction and was treated with Benadryl. “The first couple of years were really, really hard,” she remembers.
PsA Turning Point
Hertzberg realized she was not happy with the care she was receiving, so she changed doctors. ”I found a rheumatologist [whom] I love, as well as treatments that started working for me,” she says. “I also found a phenomenal dermatologist for my psoriasis.” Around this time, she decided to become a PsA advocate and build her own community, Psoriatic Arthritis Warriors, on Instagram. “I had a kind of a-ha moment where I realized that I should really start sharing my journey and help people,” she says. “Starting my Instagram account not only inspired me to help others, it inspired me to stay positive and focused and just keep fighting.”
Attitude—Plus Regular Care—Is Everything
Hertzberg takes the biologic medication abatacept via injection once a month to treat her PsA, and she goes to her derm’s office weekly for phototherapy, in which the skin is exposed to UVA and UVB rays for five minutes per visit to help shrink PsO patches and prevent new ones from forming. She also says that her positive outlook is powerful medicine when it comes to managing her PsA and PsO. “The minute you give up and surrender, this disease is going to take over your mind and your body,” she says. “You have to have that positive self-talk, and mentally be in a good frame of mind the moment you wake up.”
PsA Words of Wisdom
“Be your own health advocate, seek out different treatment options, and ask all the right questions,” she says. Those include inquiring about a medication’s side effects before taking it, a physician’s availability during an emergency, and how much experience the doctor has treating PsA, Hertzberg suggests. “Sometimes telling these doctors what you need or want is more important than them telling you, because you know your body and what your body can and cannot handle,” she adds.
Managing Stress Made All The Difference
At first, Jude Avril Duncan’s PsA symptoms seemed to come out of nowhere. “One day, I woke up with back pain and it very quickly escalated into not being able to walk more than a few steps at a time without being in immense pain,” recalls the 31-year-old digital marketer, who lives in Glasgow, Scotland. “My skin was also really bad.” Looking back, however, Duncan says she believes her intensively stressful former job triggered this debilitating PsA flare. “I wasn’t able to realize how stressed I was until it was too late,” she adds. In fact, stress is one of the leading triggers of both PsO and PsA, according to The Cleveland Clinic.
PsA Turning Point
Duncan’s path to a PsA diagnosis was far smoother than Hertzberg’s: She got an appointment with a compassionate rheumatologist quickly on New Year’s Eve in 2018 due to a cancellation. She shared with her new doctor that she suspected PsA, and the physician agreed with her after performing an exam and asking about Duncan’s medical history. (Duncan also had an MRI to assess her level of joint damage). Thanks to her quick diagnosis, Duncan says she was able to get her disease under control right away. “The medication that I was put on worked really well for my skin and my arthritis,” she adds. “I was able to get back to the life I was living before very quickly.” Today, she sees a rheumatologist and a dermatologist who work in the same practice, so the doctors communicate about her condition, and both her PsA and PsO are well managed. “I’m very lucky,” she acknowledges.
Medication Access and Meditation Can Help
Duncan takes certolizumab pegol, a biologic via injection every two weeks that has worked well for her so far. She says getting free health care and prescriptions as a citizen of Scotland helps her maintain her good health, because she can try different treatments when necessary. “The reason I’m able to change my medication when I need to, is because I get it for free.” she says. “If I had to pay, I would not be able to afford it.” Beyond taking her medication as prescribed, Duncan manages her PsA symptoms by eating a healthful diet, exercising regularly, and meditating. “I still get aches and pains,” she adds, “but I’m very much able to live a ‘normal’ kind of life.”
PsA Words of Wisdom
“Make a flare kit,” advises Duncan, who offers skincare advice and PsA/PsO support on her Instagram channel. “When I was first diagnosed with psoriatic arthritis and I would have a flare, I’d be like, ‘Where did I put my heat pads? Where are my compression socks?’” she remembers. “I could never, ever find them because I would always put them in random places.” So, Duncan created what she calls a flare kit, an easy-to-find box with compression socks, heating pads, cooling pads, some kind of non-steroidal anti-inflammatory drug (NSAIDs), and a bar of chocolate (for a spirit-lifting treat)–everything she needs to feel better. “When you’re feeling bad the last thing you want is the stress of finding things,” she says.
Find a Support Group for PsA
Lorraine Boissoneault, a writer in Oak Park, IL, a suburb on the west side of Chicago, had her first experience with joint pain during a bout of food poisoning, which some studies suggest can trigger PsA. She eventually saw a rheumatologist in 2021, who screened her for both PsA and rheumatoid arthritis (RA), since both types of arthritis run in her family—but her diagnosis was unclear at the time. “I didn’t have any visible joint damage,” she says, “and I didn’t have any of the blood markers for RA.” Boissoneault also had no history of psoriasis.
When NSAIDs and a topical gel failed to relieve Boissoneault’s joint pain—which was particularly bad in her elbows, spine, and fingers, and she developed uveitis, a form of eye inflammation that’s common with PsA, multiple times—her doctor started her on a biologic. That medication cleared up her uveitis but her joint pain persisted. “I had to stop working at one point because I was too sick,” she remembers.
When Boissoneault developed PsO on her scalp in 2023, she was finally diagnosed with PsA. Ultrasound imaging around this time also showed inflammation known as enthesitis, in Boissoneault’s SI joint and left elbow.
PsA Turning Point
Boissoneault’s initial search for a rheumatologist led to incredibly negative experiences. “The first doctor was extremely rude and made me cry,” she says. “The other one was just like, ‘I don’t really know what’s going on with you. I don’t want to deal with it.’” Finally, Boissoneault found the doctor that would turn things around for her. “She was like, ‘We’re gonna figure this out,” Boissoneault remembers. “We’ll find a way to make you feel better one way or another.” Although it took a couple of years to get a confirmed diagnosis of PsA, Boissoneault says she remained hopeful because her doctor never gave up. “Having such a good doctor has been huge in making me feel supported,” she adds.
Community Matters, Along With PT
Boissoneault, now 34, has endured three joint surgeries, and she has had to switch medications various times, either because the biologic didn’t work, or her insurance stopped covering it. However, the biologic bimekizumab-bkzx, which she started taking recently, has dramatically improved her PsA symptoms. “Before starting my newest med, I had a terrible flare where my pain was constantly around 7 [on a scale of 10] and I was having trouble sleeping or doing much of anything,” she says. Now, she averages a pain level of 2 or 3, depending on the day.
Taking good care of herself, including writing in her journal regularly, and doing physical therapy and low-impact exercises such as Pilates and walking, also helps Boissoneault manage her condition. Additionally, she has a supportive partner and she belongs to a virtual support group, Rheum to Thrive, for people with all types of arthritis. “That’s been huge,” she says. “It’s nice to be able to talk about my psoriatic arthritis with people who understand what I’m going through.”
PsA Words of Wisdom
Take one day at a time. “It’s so overwhelming at first, but it will get better,” Boissoneault says. “Be patient with your mind and body.” And build a support network, so you’re not facing this chronic illness alone. “Find a community wherever you can, whether that’s a virtual support group or friends and family,” she adds.
Small Changes Can Make a Big Difference
Joni Kazantzis, 41, was diagnosed with PsO as a teenager and has been an advocate for others with the chronic skin condition since she launched her blog Just a Girl With Spots in 2012 and an Instagram channel by the same name in 2015. Then in 2020, Kazantzis, who now co-owns an advertising agency with her husband in Princeton Junction, NJ, developed pain that seemed to “come out of nowhere” in her fingers, toes, and feet. She didn’t immediately suspect PsA, despite knowing that she could possibly develop it, until she experienced a severe PsO flare. “My medication was probably masking the psoriatic arthritis, until it stopped working well,” she says. Kazantzis saw her doctor, who confirmed it was PsA. Still, she struggled for about a year to find a medication that worked for her. “It was pretty miserable,” she remembers.
PsA Turning Point
Kazantizis’ PsA symptoms erupted at the height of COVID-19, when she was working remotely up to 15 hours a day for an advertising agency, her husband was launching his own business, and they were trying to parent their daughters, who were then 3 and 5. “I was sitting in front of my laptop, or I would be on calls,” she remembers. “I was stressed all the time. I’m a stress eater, so I was eating potato chips and drinking a lot of wine, just living an unhealthy lifestyle.” Ultimately, Kazantizis says she realized she needed to take a step back from work and change how her whole family was living–and get her health back on track. “We were able to go for walks,” she says. “My kids were getting more attention, so they weren’t as stressed out and constantly fighting. We were able to spend more time cooking.”
Even Modified Movement Can Manage PsA Symptoms
Kazantizis was taking the biologic adalimumab for her PsO when she developed PsA. Next, she tried two other medications, the biologic ixekizumab and the disease-modifying antirheumatic drug (DMARD) apremilast—neither of which controlled her symptoms. Currently, she manages her PsA with the interleukin-23 blocker guselkumab, as well as eating a healthful diet and taking turmeric supplements (this golden orange spice has been shown in studies to reduce the swelling caused by PsA). She also exercises four or five days a week. Kazantizis has a particular fondness for Orangetheory classes–intervals of high intensity exercises that blend cardio and strength training–that she says help her manage her stress, as well as improve her physical health. She admits that PsA has taught her to accept her limitations, particularly on days when she isn’t feeling her best. “Maybe I can’t run, but I can walk,” she says. “Or maybe I can’t lift very heavy weights, but I can use the bands.”
PsA Words of Wisdom
The entrepreneur and former athlete says it was hard for her to slow down at first—but listening to her body and “doing what feels right” has been key to managing her PsA. “Give yourself some grace,” Kazantizis adds. “Be flexible with yourself.”
https://www.healthcentral.com/condition/psoriatic-arthritis/psoriatic-arthritis-treatment-turning-point
