Seronegative Rheumatoid Arthritis: What You Need to Knowby Lene Andersen, MSW Patient Advocate
Getting a diagnosis of rheumatoid arthritis (RA) can be a challenge. Symptoms may come and go in the beginning; symptoms may overlap with other conditions; tests may be inconclusive. And in some cases, blood tests don’t show RA at all. This is called having seronegative RA. This slideshow includes the experiences of real people who are seronegative.
Quotes are edited for length and clarity.
Blood tests: rheumatoid factor
“I was diagnosed seronegative when I was 27. For 30 years I wondered if a mistake was made.” — Mary
Rheumatoid Factor (RF) measures the level of rheumatoid factors in your blood — proteins that can attack the healthy tissues in your body. This test is negative in 20 to 30 percent of people with RA. When it is positive, you may have RA, but it can also indicate a number of other conditions. It is also positive in a small percentage of healthy individuals.
Blood tests: anti-CCP
“One doctor didn’t believe I had RA until he ran a new test and it was off the charts.” — Lynn
The anti-CCP measures anti-cyclic citrullinated peptides — created when the immune system produces autoantibodies. Results show 60 to 80 percent of people with RA test positive, which may be associated with more severe RA. The anti-CCP test may be positive as much as 10 years before you develop the disease and is involved in research to stop RA before it starts. A negative anti-CCP does not mean you do not have RA.
RF vs. anti-CCP
“I had a swift diagnosis thanks to my family history of being seronegative.” — Joanna
Historically, you might be diagnosed with seronegative RA if the RF wasn’t positive. The anti-CCP test is a newer test, which is more accurate than the RF. Negative anti-CCP is now the basis for a diagnosis of seronegative RA. As of yet, no blood test is always positive in cases of RA. An RA diagnosis is made through a combination of medical history and a physical exam, using blood tests as confirming data.
Delay in accurate information
“Any time I see any doc other than my rheumatologist or GP (general practitioner) I get treated as though my RA is all in my head.” — Darlyne
Unfortunately, the information that anti-CCP should be the basis for determining seronegative RA has not yet moved past beyond the field of rheumatology. If aware of the concept of seronegative RA, most doctors still understand this as being related to the RF test. In addition, many doctors don’t know that it's possible to have RA if the RF is negative.
What your doctor doesn’t know can hurt you
“I told the doctor I saw myself in a walker in six months. He decided to treat my pain as if I had RA to see if it helped. It did.” — Francine
The journey to diagnosis starts at your family doctor. They will run a variety of tests, usually including the RF blood tests, but not often anti-CCP. If the RF is negative, this may be the end of it. Many GPs are not aware that RA can be present in even if the RF blood test is negative, so such cases may not be referred to a rheumatologist.
Barriers in specialist care
“If I'd had visible signs of RA, if something had deformed, then maybe some doctor somewhere would believe me.” — Laila
Even if you do get referred to a rheumatologist, you may also encounter difficulties in getting a diagnosis of seronegative RA there. Many in the RA online community have reported seeing rheumatologists who will not diagnose the condition without a positive RF. Hopefully, updated information about RF and anti-CCP will eliminate such problems.
Consequences of delay in RA diagnosis
“It took years and years for me to be diagnosed. No doctor would listen to me. It progressed fast like a tornado. If someone had listened I probably wouldn't be as bad.” — Susan
The best method of getting control of RA is by treating the condition early and aggressively. The longer the delay to diagnosis and treatment, the more difficult it may be to achieve remission and prevent damage to the joints.
Are positive and seronegative RA different?
“I was lucky to be taken seriously from the start. I went from 0 joints to ALL of them in a few weeks; there was no mistaking it for normal or an injury.” — Rebecca
Current research indicates that seropositive RA tends to be more severe than the seronegative kind, leading to more joint damage. When someone has seropositive RA, family members may also be more likely to develop the condition. Both types appear to respond equally to medication. Of course, there are always exceptions to the trends.
Can seropositive change to seronegative and vice versa?
“There are times I have actually PRAYED for the RF to be positive just so I can say: ‘See? It’s NOT in my head.” — @WW2HistoryGal
In the RA literature, viewpoints differ on the possibility of seroconversion, that is seronegative becoming positive or vice versa. Some indicate that seropositive can convert to negative during treatment, while reviews of studies seem to indicate that seroconversion from positive to negative is rare. It’s also rare for someone who is seronegative to become positive.
Can seronegative status means something other than RA?
“I have been told it’s only osteoarthritis. Saw a specialist for OA and he scoffed. I’m young, not overweight, and there is damage all over. It’s RA. — @angelamooer
Early stages of inflammatory arthritis can be confusing, for patients and medical professionals. Symptoms overlap and it may take a while for the particular condition to clarify. Seronegative status may lead to a diagnosis with another condition, such as psoriatic arthritis. Osteoarthritis and seronegative RA may also look similar.
What you can do
“It leaves doubt in your mind and makes you feel like there has been a misdiagnosis, like maybe you have something curable.” — Amy
If you have problems getting diagnosed or treated due to negative blood tests, advocate for yourself. Ask your doctor to order both RF and anti-CCP tests. If negative, find information to show your doctor. Ask for a referral to a rheumatologist regardless of test results. If a rheumatologist won’t diagnose without positive blood tests, get a second (or third) opinion.
“1st doctor ignored my self-reports. 2nd doctor said I had fibro (fibromyalgia) and gave me muscle relaxers & antidepressant. 3rd doctor finally began to treat me with RA meds.” — Sally
It can be difficult and frustrating when experts get stuck due to a negative test result. Remember that you are an expert, too — an expert on your body and your life. You know the symptoms and the impact on your life better than anyone. Keep pushing until you get the answers you need.