Communication

Coming to a diagnosis of Rheumatoid Arthritis (RA) can be easy. We are spared months of bouncing between doctors and tests if we have the “right” symptoms and the “right” labs. Unfortunately, for many, the road to a RA diagnosis isn’t quite so quick. This is most commonly seen when the Rheumatoid Factor (RF) is positive but the anti-cyclic citrullinated peptide antibody (anti-CCP) is negative. 

As we’ve spoken about before, the RF antibody blood test is far from perfect. Despite its name, the Rheumatoid Factor is not specific for RA. In fact, it is seen in many other medical conditions (including the condition of “getting older”). Usually ordered with a RF (and if not with, then usually immediately afterwards) is the anti-CCP antibody. This antibody is MUCH more specific for RA and is seen in individuals years before developing RA symptoms. After 20+ years of practice, it is now standard of care to order an anti-CCP when concerned about RA. And our dependence on it can lead many to be confused when it returns negative.

It is rare for someone to get a diagnosis of Mixed Connected Tissue Disorder (MCTD) right away. Most people bounce around from specialist to specialist, collecting diagnoses before they are finally diagnosed with MCTD. This, understandably, leads to confusion and some trust issues. How could it have taken so long to get to a diagnosis? How can you be sure it’s MCTD?

And patients aren’t the only ones confused. Doctors, especially non-rheumatologists, can be confused by MCTD, opting to use the short-hand “lupus.” In many instances, that may be ok, but for the Rheumatologist, and patient, the distinction is important.

If you have ever seen a Rheumatologist or there has ever been concern for lupus, you most likely have had your complement 3 (C3) and complement 4 (C4) tested. Unfortunately doctors do not do a great job of explaining these tests or their results, but are more often than not, considered when your doctor is assessing whether your lupus is “active” or “quiet.”

The complement system is complex and most doctors, aside from rheumatologists and immunologists, do not remember the specifics of the “complement cascade.” But you don’t need a PhD in immunology to have a basic understanding of how complements work and what they can teach us about our body.