Those of us who have been in clinical practice for a while all have those individual patients we remember who represent the worst of the worst in a given disease state. It’s that patient with rheumatoid arthritis who has such severe hand deformity that they can no longer perform basic motor skills, or that psoriatic arthritis patient whose skin is covered from head to toe with psoriasis and whose hands are so swollen that they look like baseball mitts.

When I think of the “worst of the worst” among my patients with ankylosing spondylitis (AS), I always come back to James. He came to us as a 39-year-old, which is a typical age when we get a lot of patients with AS referred our way. James’ physical limitations, however, were far from typical. At our initial visit, his cervical spine was completely fused and he had zero range of motion (ROM) in his neck. Certainly, that level of physical deformity stood out, but what was perhaps even more remarkable was that James had historically treated his condition with nothing more than NSAIDs.

James was diagnosed with AS 10 years before arriving in our practice. His symptoms began after a motor vehicle accident in his mid-20s. For several years, James attributed his chronic neck pain to the aftermath of the accident and didn’t seek professional treatment. When the pain began to migrate to his lower spine, he tried massage therapy, which helped stabilize the symptoms for a short time. When the massages began having less and less effect, James said his massage therapist told him that he had seen patients with issues such as James who were eventually diagnosed with AS. He recommended that he consider seeing a rheumatologist for an evaluation. While not the point of this essay, I should take a moment to commend the massage therapist for observing this pattern and looking out for the wellbeing of his client.

James’ initial rheumatology visit and X-rays confirmed the diagnosis of AS. James was referred to physical therapy, which unfortunately made his symptoms worse. He therefore went back to his massage therapist and failed to follow up for additional care with his rheumatologist.

Over the course of the next few years, James was involved in two more car accidents and noticed that he continued to lose ROM in his neck. He attributed these issues to the car accidents and not to a chronic condition such as AS, so he simply continued to self-treat with over-the-counter ibuprofen. Four years later, at the age of 33 years, James’ neck was completely fused. He decided to try a second rheumatologist after moving to a different state. X-rays confirmed that James now had advanced AS, with fusion of his sacroiliac joints along with the cervical spine. He was prescribed naproxen 500 mg and sent home with information about etanercept. Despite the need for something stronger than an NSAID, James reiterated that he was not interested in biologic therapy and was able to manage OK with naproxen alone. That pattern continued for the next 3 years despite his rapidly deteriorating condition. James had a total hip replacement after experiencing pain in his left hip and shortly thereafter moved again to another state. This is what finally brought him to our practice.

During our initial meeting, I began as I often do by having James walk me through an oral history of his disease. I was stunned at how severe his disease had become in such a short time and perhaps even more shocked by how well—at least outwardly—James thought he was doing. He rated his pain as only a “2” on a 10-point scale (1=no pain and 10=worst pain imaginable) and said his overall health was a “3” on a 10-point scale (0=very well and 10=very poorly). While his physical limitations and X-rays told otherwise, James truly thought he was doing just fine. He explained to me that the main reason he came to our practice was for a simple refill on his naproxen and not because he wanted us to help in any significant additional manner. In his mind, the numerous car accidents were the root cause of his problems and the “damage was already done.” There was nothing, James told me, that biologics would be able to do to help, so he was fine sticking with NSAIDs.

There was one small window of opportunity that arose from this meeting—James told me that his wife was expecting their first child, and he was a bit concerned about his ability to help care for the baby. I told him that we could offer infliximab or adalimumab injections to prevent further ossification of his spine, but after thinking about it, James declined and said he would stick with naproxen. I still see him annually for his naproxen refills and always inquire about his condition and willingness to try something else, but at least so far, James won’t budge.

During one of our recent conversations when I urged James once again to consider biologic therapy, he told me that one of his previous rheumatologists concurred with him that there was nothing that could be done to reverse his current damage. This was a primary reason why he felt biologic therapy would not be helpful. At this point, James is simply comfortable having adapted to his disabilities. He functions as best he can. As part of his team of healthcare providers, it’s a harsh reality for me to accept because I know there are lots of things James could try that might help, but we can’t force our opinions onto our patients. Ultimately, it’s his life and his choice.

I often wonder whether biologic therapy earlier in James’ disease course would have prevented such devastating damage to his spine, or if his previous rheumatologist was right and that his condition had deteriorated so much by the time he sought medical help that the “damage was done.” Many of our newly diagnosed patients with AS are young men who attribute their chronic back pain to a certain activity or sport, and they forego medical care for years while self-treating with ever-increasing dosages of NSAID. They often have a “I’ll tough it out” mentality until things become serious, at which point they land in our office. James’ issues are certainly on the extreme end, which is why I associate him with the “worst of the worst” among my patients with AS.

AUTHOR PROFILE: Carrie Beach BSN, RN-BC, is a rheumatology nurse with the Columbus Arthritis Center in Columbus, OH, and the President of the Rheumatology Nurses Society

Participants will receive 2.75 hours of continuing nursing contact hours by completing the education in our course: Rheumatology Nurse Practice: Treatment Pathways in Ankylosing Spondylitis