Patient Journey: Living with Psoriatic Arthritis

Psoriatic arthritis (PsA) is a chronic, inflammatory disease affecting the joints, ligaments, and tendons. Here, two women with PsA—at different stages of life—share what it's like along with  their top tips. 

Don't let the pain of psoriatic arthritis keep you down. Medication, lifestyle changes, and exercise often improve the worst symptoms.

Psoriatic arthritis can strike at anytime but most often affects people between the ages of 30 and 50. Children can also have PsA.1 Brenda Lockard Smatlak, 55, and Alexa Assalley, 23, know what it's like to live with this painful condition and have found some workarounds. 

Punxsutawney, Pennsylvania may be best known for its famous resident rodent. Punxsutawney Phil has been predicting the start of Spring since long before Brenda made it her home more than two decades ago. (Groundhog's Day started February 2,1887 according to the Punxsutawney Groundhog Club.) 

For most of her life, Brenda treated the red itchy patches (psoriasis) on her skin with a variety of topical creams. But in October 2017, she was diagnosed with breast cancer and underwent chemotherapy and radiation.

"Once I finished treatment a year later, I was not bouncing back how I should have been,” recalls Brenda, a nurse who spent most of her career in home hospice care. “I just wasn’t feeling good and I had a lot of fatigue. My doctor sent me to a rheumatologist.”

In the fall of 2019, she was diagnosed with psoriatic arthritis and her doctor prescribed methotrexate as a once a week treatment. The medication worked for a couple of months, but then Brenda began having some achiness and pain.

Her doctor added another medication—sulfasalazine, a disease-modifying anti-rheumatic drug (DMARD)—to her care routine but it didn't help. She's on on Humira now. Humira is delivered via injection that she gives herself once every two weeks.

"Humira has helped decrease the pain but it pain never goes away completely and the fatigue continues," Brenda says adding she's hopes to eventually discontinue the methotrexate. "But I really can't complain. I know that so many patients need multiple meds on their regime."

Still, she has skin lesions behind her ears, on her scalp, and on her arms and legs. The fatigue is often present, and she nearly always has a backache.

“My back hurts—there is documented arthritis in my spine—but so do my hands and my feet,” she says. “There are times when I hurt everywhere, like how you feel when you have a bad flu. Sometimes, the pain subsides.”

Learning to Take it Slow

Brenda has worked as a homecare hospice nurse for 35 years. She lives with her husband, a teacher. The couple has no children but Brenda loves to dote on her nieces and nephews, all of whom live nearby.

Brenda recently retired from a long career working as a hospice nurse to focus on her health.

Brenda took a year off while being treated for cancer, and then returned to work in October 2018. The fatigue was debilitating. She was at times so tired she needed to pull the car over while en route to work and found the need to take quick and frequent rest breaks between patients.  

On many days, her job required her to drive 100 miles to care for all the patients assigned to her  but in March 2020, she took leave again to avoid being exposed to the virus.  Due to her health issues and compromised immune system, the virus could have proved fatal. So far she has managed to avoid COVID but ultimately decided to leave her job permanently and focus on her health. 

The psoriatic arthritis-related pain has forced Brenda to make lifestyle changes. For instance, she used to love shopping and going to the mall. But now she rarely ventures out to the grocery store and spends nearly all her time at home. She has learned to pace herself.

“There are days when I do nothing but go from the bed to the couch and I just read a book,” she says. “Other days, I am able to do more. My husband does a lot more around the house than he used to.”

Still, Brenda says, she tries to stay positive. “There are days when you get a little bit down, but I enjoy my good days and lay on the couch on bad days,” Brenda says. “I have all my family within an hour radius. They keep me smiling.”

Young and Chronic

Alexa Assalley, 22, started having aches and pains when she was a teenager—around the age of 13. She also experienced such crushing fatigue that her pediatrician wondered at one point if she could have narcolepsy.

Alexa isn't letting psoriatic arthritis interfere with her dream of becoming a nurse. She's set to graduate from Indiana University next year.

When she was 15, her parents took her to a rheumatologist who said, after some tests, that she did not have rheumatoid arthritis. “He never considered psoriatic arthritis because there is no definitive blood test the way there is for rheumatoid arthritis,” Alexa recalls.

She just lived with the ongoing pain and fatigue until October 2019, when her mother accompanied her to a visit with a new rheumatologist near their Indianapolis, Indiana home.

When the new doctor noticed that Alexa’s mom had psoriasis on her hands, he asked whether any doctor had ever mentioned psoriatic arthritis for Alexa. He ordered a full work-up and a series of extensive testing. Within a couple of weeks, Alexa learned the cause of her problems—she had PsA.

“It was actually a huge relief to find out,” she recalls. “It gave me validation that my pain was real. I was not just lazy or ‘slacking off.’ It felt good to have a name for my illness and to know it was real and treatable.”

She and her doctor discussed various courses of treatment, and Alexa began to take a biologic called Enbrel in March 2020. It’s a weekly injection that she says has drastically improved her symptoms.

“From a physical standpoint, I am now able to walk two or three miles without pain or swelling, which I haven’t been able to do since I was a child,” she says. “Mentally, it has given me a huge relief.”

Last year (2020) brought many trials and tribulations, along with covid, for Alexa. "It forced me to slow down and take time off school, which didn’t exactly fit in my plan, but life happens and you roll with the punches. I’ve spent the last year trialing different treatment regimens."

Alexa, who lives in Indianapolis, is working toward her BS in nursing at Chamberlain University. She also works part-time as a patient care technician in the department of cardiovascular surgery at the hospital, and finds that she has a lot more stamina to work and to study since she started on the Enbrel. She even has time to exercise.

“I have to be careful and I can’t do high impact exercises, but I can cycle and I’m also getting back into yoga,” she says. She has a few patches of psoriasis on her scalp but other than that, her skin is clear. 

Tolerating Side Effects

The medication has had a few side effects but they’re tolerable, Alexa says. She tends to develop a headache two or three days after the shot but effectively treats it with fluids and an over-the-counter pain reliever (Excedrin is her go-to).

"For now, I’m on Stelara and methotrexate. We are hopeful this regimen will work for many years,” she says.

Working with a physical therapist has been a game changer. Alexa credits the PT  sessions with being able to stay active and use her muscles again.

“For a long time, everything was so painful, I couldn’t even try physical therapy,” she says. “Any sort of activity brought on flareups. I'm about to graduate from PT but plan to continue doing the exercises on my own.”

Thanks to a support system that includes her mother, sister, and friends, Alexa is able to rely on a wide network of people when she’s not feeling great. “When I am having a really tough day, my friends will drop off food, ice packs and ibuprofen,” she says. “It’s great to know they are there for me.”

Her advice to others with PsA? “Take it one day at a time because there is just no other way to get through it,” Alexa says. “And when you have a day where you just break down and think you can’t go on, relax, take a bath, go to bed, and start fresh the next day. Sometimes, missing a deadline or losing out on a few hours of studying is the best thing you can do for yourself.”

Having a positive attitude helps her cope. "Despite 2020 being a difficult year, I am so grateful for it. I am the healthiest, both mentally and physically, that I have been in a very long time!" says Alexa who is looking forward to graduating from nursing school and beginning a career that lets her help others get well. 

 

 

 

 

Updated on: 07/23/21
Continue Reading:
The Empowered Patient's Guide to Psoriatic Arthritis
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