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Beginner’s Guide: Seronegative Rheumatoid Arthritis

As I’ve mentioned before, there are over 100 types of arthritis, and one of the more common ones is rheumatoid, with 1.5 million American patients (x). When diagnosing rheumatoid arthritis, a lot of doctors do a blood test. But did you know that you can have have RA and still test negative? That’s called seronegative, and I am one of those patients. If you or a loved one have seronegative RA and you’re trying to understand it, this is a beginner’s guide to it. Here I’ll address facts about seronegative as well as how to deal with medical professionals and other patients when you’re seronegative.

One of the main ways to diagnose rheumatoid arthritis is through a blood test. But did you know that you can test negative and still have it? That's called seronegative, and up to one third of RA patients are seronegative. Here's what you should know about being seronegative and how to deal with it.

All About Seronegative Rheumatoid Arthritis

What is it? When doctors diagnose rheumatoid arthritis, one of the things they do a blood test and look for what’s called the rheumatoid factor and anti-CPP antibodies (x). Patients who test positive to these definitely have RA. However, some patients are full of the symptoms of RA but they test negative. This is called seronegative, and patients who test positive are called seropositive. This still means that a patient has RA, and being seronegative is not considered a separate type of arthritis (x).

How it differs from seropositive RA? Overall, it doesn’t. I still have all the same symptoms that a seropositive patient does: chronic inflammation, morning stiffness, fatigue, joint pain, etc. In the past, doctors might believe that seronegative patients do not have a case as serious as someone who is seropositive, but that is no longer considered the case (x). What is especially interesting is that a 2016 study found that seronegative RA patients might in fact have higher inflammation levels than seropositive (x). (In a personal anecdote about this, I will add that I have had severe disease activity almost constantly since I was diagnosed, and my rheumatologist told me once that I shouldn’t physically be able to get out of bed with how severe mine has been. Of course, I’m probably too stubborn for my own good, so I’m not letting a little something like a highly active autoimmune disease slow me down.)

Additionally, some researches contend that a potential difference between seronegative and seropositive patients might be the joints affected (x). This refers to which joints are affected, so seropositive patients might have different affected joints than seronegative ones. Regardless, seronegative patients still need as aggressive treatments as seropositive ones.

How many people are seronegative? Studies have found that up to a third of RA patients are seronegative, which would be around 500,000 Americans (x, x). For what it’s worth, though, you should know that some seronegative patients are initially or later diagnosed with a different type of arthritis instead, as many types of arthritis do not have a blood test.This makes it hard to decipher how many patients exactly are seronegative. For example, I was initially diagnosed with psoriatic arthritis due to a history of psoriasis in my family. Since I haven’t had any psoriasis episodes in years and my last one was before I was diagnosed with arthritis, we think that potentially what was thought to be psoriasis may have been eczema instead, meaning my arthritis is rheumatoid rather than psoriatic.

Seronegative rheumatoid arthritis means that you test negative to the RA blood test but you still have RA. Whether you're seronegative or know someone who is, this is a beginner's guide to it.

How To Deal with Seronegative RA

Treatments – Seronegative patients treat their RA just like seropositive patients. It doesn’t affect treatment at all, or at least it shouldn’t. I have been through all the same treatments as seropositive patients. Is it any possible that treatments could potentially differ in some ways from seropositive patients in the future? Sure. Is there proof of that right now? No.

Medical professionals – While there are many patients who are seronegative, I have dealt with doctors and other medical professionals who believe that if you test negative you don’t have RA. This is obviously wrong and a big issue if you’re a patient. My rheumatologist doesn’t believe this, but I have seen other rheumatologists who do (I really don’t advise seeing Vanderbilt rheumatology if you live in or around Nashville unless they have changed the department a lot since 2013). Usually, these are older medical professionals who probably haven’t stayed up-to-date on seronegative information. If your doctor is using the fact that you have a negative rheumatoid factor as proof that you don’t have RA or arthritis, talk to them about seronegative statistics. However, if this doctor is your rheumatologist, I strongly suggest you get another opinion. You might not have arthritis, but your rheumatoid factor should not be their primary reason why you don’t have it. If they are basing their opinion solely on your rheumatoid factor or the presence of anti-CPP antibodies, you should see someone else because they are not up-to-date on the arthritis information they should know.

If this is another doctor of some kind – PCP, orthopedist, gynecology, pulmonology, etc. – or another medical professional of some kind, I wouldn’t even bring up the fact that you’re seronegative. All that they need to know is that you have RA. If they ask about your rheumatoid factor, then you shouldn’t lie, but they don’t need to know that you’re seronegative. Best case, that won’t make a difference to them. Worst case, they’ll doubt that you have RA, and you don’t need that kind of negativity in your life.

Other arthritis patients – Theoretically, you shouldn’t have any problems with other patients, but some patients just may not be aware that seronegative is a thing. Should you have any problems, tell them about what seronegative is and then move on. If they don’t believe in it, that’s on them.

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