Before the medication, Downey wasn’t able to travel at all because of her foot pain. “What was significant is that I was able to actually plan a trip, attend, and enjoy it,” she says. “Psoriatic arthritis is so unpredictable, it is difficult to make travel plans.”
Downey says that some of her fatigue is now coming back, and she’s been connecting with other people who have psoriatic arthritis through CreakyJoints, an advocacy and research organization for people with arthritis and rheumatic disease, for support. Overall, though, Downey says that she’s just trying to stay positive and communicate with her doctor about how she’s feeling.
4. “Within three to four weeks, I was walking without a cane.”
Katie Roberts, 44, was diagnosed with psoriatic arthritis when she was 17. Initially, she took medications like ibuprofen and was given steroid injections to calm inflammation in her joints, which she says helped a bit. As a next step she was prescribed an immunosuppressive medication, but it also didn’t do much to ease her constant pain. At the time there were fewer options to treat psoriatic arthritis, so she continued with the treatment even though it wasn’t effective for her. “Something was better than nothing,” Roberts tells SELF.
She then switched to a biologic that was released to treat psoriatic arthritis, but she experienced an allergic reaction to the medication and had to stop taking it. Eventually, she was able to take part in a clinical trial for a biologic that was approved by the Food and Drug Administration to treat psoriatic arthritis and similar conditions in 2003. She’s been taking that same medication for nearly 20 years.
“I noticed a difference within a few weeks,” Roberts says. “At the time I was mostly in a wheelchair and using a walker. I went to a cane within a matter of a few weeks. Then, within three to four weeks, I was walking without a cane. I was able to walk unassisted pretty quickly, and I got my life back.”
Roberts says the medication was so pivotal for her, because it allowed her to have independence. “I was so young when the disease really set in,” she explains. “I had to have people help me bathe, get dressed, and do my hair and my makeup. I couldn’t go to the mall and hang out with friends because the walking was too much.” But once her condition improved, Roberts was able to do the things she wanted to. “My hands worked, my knees bent. I could sit in a chair and actually hold down an office job. I could go grocery shopping—all by myself —for the first time in a long time.”
5. “Walking unassisted in D.C. was huge for me.”
Jaime Holland, 40, was diagnosed with psoriatic arthritis in her early 30s and started a biologic infusion in 2013. Holland, who also has Crohn’s disease and psoriasis, says that her skin started to improve, but her arthritis and Crohn’s symptoms only improved for a week or so before going back to where they were. “Walking felt like I was stepping on broken glass, and my fingers were numb and swollen to the point I could barely make a fist or grip anything,” she tells SELF. Her doctor tweaked the dosage of that medication and her symptoms improved, but Holland developed an allergic reaction to the treatment after a year. She had to change her medication a few more times due to allergic reactions until she finally landed on the right one for her, which she’s still taking. “All in all, it took close to four years to cycle through meds until we found one that worked best,” she says.