The Pitfalls of Seronegative RA
As many as a third of people with rheumatoid arthritis/rheumatoid disease (RA/RD) are diagnosed with what is called seronegative rheumatoid arthritis.1 This means that rheumatoid factor is not present in an individual’s blood, yet additional indicators of RA/RD lead the rheumatologist to a rheumatoid arthritis diagnosis.
I have seronegative rheumatoid arthritis, and it has come with some challenges.
Seronegative RA and rheumatoid factor
The presence of rheumatoid factor in one’s blood is not sufficient to diagnose RA/RD. However, a high level of rheumatoid factor is indicative of an autoimmune disease, most often rheumatoid arthritis or other chronic conditions such as cancer, lupus, connective tissue disease, or inflammatory conditions.2
Therefore, when a patient presents with a high level of rheumatoid factor and symptoms of RA/RD such as morning stiffness and pain and inflammation in multiple joints, rheumatologists have a strong case for a rheumatoid arthritis diagnosis. The rheumatoid factor is like a big flashing arrow pointing the doctor to RA.
A lack of rheumatoid factor makes diagnosis complicated
When rheumatoid factor is not present, the diagnostic process is often more complicated. Not only is the flashing “RA” sign turned off for the doctor, but some medical professionals erroneously believe that the absence of rheumatoid factor rules out a rheumatoid arthritis diagnosis.
Did I have RA without even knowing it?
I likely had juvenile rheumatoid arthritis (JRA) as a child, but I was instead diagnosed with a series of sprained wrists and ankles, and in my teens with cartilage issues in my knees. I know doctors ran blood tests (I remember my mom cajoling me into having my blood drawn more times than I can count). I imagine that because labwork didn’t indicate rheumatoid factor, the underlying condition went untreated.
In college I spent almost a year with my wrist in a splint, diagnosed with tendonitis. Then at age 22, nearly every joint in my body became swollen and painful, and I experienced heavy fatigue. My general practitioner sent me to an orthopedist, who suspected Reiter’s Syndrome. He sent me on to a rheumatologist.
A rheumatologist who looked beyond standard bloodwork
I don’t know how many doctors had looked at my joints over the years by that point, but the rheumatologist was the first to look beyond the standard lab work. His physical exam indicated pain and swelling in multiple joints, as well as RA nodules. I also had morning stiffness, although back then I didn’t know the term for it. X-rays indicated minor joint damage. The rheumatologist took all this information and diagnosed me with seronegative rheumatoid arthritis.
I have often wondered how much sooner I might have been diagnosed if my rheumatoid factor (RF) levels had been high. Instead, it seems the lack of RF threw about a dozen doctors off the trail of a rheumatoid arthritis diagnosis. The result was intermittent pain for over a decade that perhaps could have been reduced with appropriate treatment.
Continued challenges with lab work
In the 20 years since my diagnosis, I’ve had three different rheumatologists. Even though I’ve never had abnormal results on standard lab work, they’ve each persisted in reporting at my check-ups, “Well your labs look good.” This has been frustrating, as my lab work looks the same whether I’m having a good stretch or I’m in a flare. It’s meaningless information, so I’d prefer not to be told that it looks “good” if I’m in terrible pain.
Validation from the VECTRA test
About 10 years ago my rheumatologist asked me if I wanted to have the VECTRA test performed. She said insurance doesn’t always cover it, but it can give additional information that standard lab work doesn’t.
I felt ambivalent about it, and I told her I’d let insurance coverage determine whether to move forward with the test. It was covered, and I’m grateful it was because for the very first time my labwork reflected how my body felt. With a score of 39, I tested in the moderate RA disease activity range.
Feeling misunderstood with seronegative RA
It was really validating to see my labs mirror my symptoms. Having an invisible disability, I’ve often felt misunderstood. When I disclose that I have RA/RD, some people respond with statements of disbelief such as “But you’re so young” or “But you look so good.”
While these statements may be well-intentioned, albeit uninformed, they feel invalidating. When a doctor tells me my labs “look good” even though I’m in the middle of an excruciating flare, it feels similarly well-intentioned and uninformed. However, coming from someone who is supposed to be an expert, uninformed doesn’t give me comfort.
A need for RA education and awareness
As a significant number of people with RA/RD are seronegative, I wish rheumatologists would note this when commenting on lab work.
More importantly, I wish all general practitioners would become aware of seronegative RA, as I’m sure there are others like me whose bloodwork is postponing accurate diagnosis. This leads to people in pain not getting the treatment they need to improve their quality of life, all because their “labs look good.”
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?