Things are pretty hectic these days and that typically brings an increase in fatigue and joint symptoms. It doesn’t help that my Humira injection is due tomorrow but I’m itching to take it today with the notion that it may help me feel better. Of course, today I read of a study demonstrating that stress increases the release of inflammatory proteins like TNF alpha.[i] But I was more intrigued by the Arthritis Foundation article about how long it takes for rheumatic diseases to be diagnosed.[ii] Average time to diagnosis varies (see table below) but it is clear that folks with these diseases suffer for a long time before getting proper treatments. The article states, “Many rheumatic diseases have symptoms that overlap, and blood tests are rarely conclusive.”
|Rheumatoid arthritis 6 to 9 months
Juvenile arthritis 5 months
Fibromyalgia 2 to 5 years
Sjögren’s syndrome 3 to 7 years
Ankylosing spondylitis 6 to 9 years
Such was the case with me. After being referred by my general practitioner (an internist), my rheumatologist first suspected ankylosing spondylitis since my primary symptoms at the time were uveitis (inflammation of the iris) and achilles tendon problems. But my blood test for HLA-B27, the common genetic marker for this disease, was negative. About the same time, other tell-tale symptoms of RA began appearing…middle finger joints, wrists, elbows, knees – all occurring symmetrically on both sides. Bone erosion was noted via x-rays. Morning stiffness (what’s that? I’m stiff all day long!) and overwhelming fatigue (the truck running over you type) wrapped it up for the rheumy and he diagnosed me with RA.
This diagnosis was made in spite of negative RA factor blood tests. My RA factor tests have always been “borderline”…it’s not a black and white test. Another antibody test, anti-cyclic citrullinated peptide (anti-CCP) is another one used to determine RA. So far, I’ve been negative on that one as well. Therefore, I have what is called “seronegative RA.” I met the criteria using the now outdated diagnostic criteria.[iii] The diagnosis criteria were recently updated[iv] and according this new system, I still meet the diagnostic critieria without having positive blood tests. My rheumy regularly mentions that seronegative RA patients tend to fare better with symptoms over the long run and this is borne out by research.[v] Some seronegative RA patients “convert” over time…they end up with positive tests. Interestingly, a large proportion of folks diagnosed with RA are seronegative…up to 30% in some studies.[vi]
Being seronegative makes me feel somewhat like the stepchild to those who are seropositive. Maybe I’m not “official enough”. But then I have to step back and remember that my symptoms are real, I have permanent joint damage, and I’m forking out upwards of $20,000 a year for biological treatments (well ok, my insurance covers most of it). Perhaps I will seroconvert someday. But in the meantime I’ll hang onto the research that says that us seronegative RA types have a better long term prognosis.