For millions of people around the world where disease-modifying treatment is unavailable, this is the natural history of RA: chronic pain, relentless joint destruction, immobility, early death.
The mother knelt down and brushed her daughter’s hair back with a free hand and held a cup of water to her lips. Even if aggressive disease-modifying medications were available (they were not), it was too late. Joint replacement surgery might improve function—if I could convince one of the local orthopedic surgeons to operate—but the disease would continue to consume her without aggressive, unavailable immunotherapy.
Lynn was asking me a question.
“Why do you think this isn’t Lyme disease?” Her tone was sharper, confrontational.
Lyme Disease
I’ve lost the current battle. I know this, but I explained my rationale. “We see a lot of Lyme arthritis here in southern Maine. Most cases present with solitary swelling in a single joint, usually the knee. If it involves more than one joint, it tends to be asymmetric, say, the left ankle and the opposite wrist. No one knows why, but that’s the pattern. Although Lyme disease, in special circumstances, may not test positive, by the time people have arthritis, the screening test is very reliable. Your doctor tested you for Lyme disease and the test was negative.”
“Can you test me again? I’ve read that the infection can hide and the test can be negative one time and positive the next.”
Internally, I was scrambling. “I’ll test your blood for Lyme disease at a local research lab that specializes in immunologic research,” I answered. “I’ll add a test for parvovirus, which can sometimes trigger inflammatory arthritis, and a recently developed test called CCP that helps us diagnose early rheumatoid arthritis when the rheumatoid factor is absent. In the meantime, would you consider taking a small dose of prednisone? You can barely dress. It must be … difficult taking care of the baby. If you’re uncomfortable about the prednisone and breastfeeding, you can check with your pediatrician.”
Handing me back the prescription, she agreed to the additional lab, but not the prednisone. On the billing sheet, I checked off the lab and additional time for an extended follow-up visit in two weeks. Cradling the baby carrier at the crook of her elbow, she limped ever so slightly down to the lab.
Rheumatoid Arthritis Explained
What exactly is RA? And how is it possible that one morning not long before, I had diagnosed a 101-year-old woman with new-onset disease and my very next consult was a 3 year old with the same disorder?