The Real Story of Seronegative RA: What the Blood Tests Don't Show

I speak about my seronegative Rheumatoid Disease often because it irritates me. I am a scientist so it does bother me! I strongly believe there is a reason for everything so seronegative or completely normal blood work and x-rays don’t work for me. My dog's health got me thinking... My eldest dog, Affie, reminded me of this recently. She is over 13 years old and except for a recent foray into congestive heart disease, she has no other health issues. She doesn’t even really have health “issues” at all. Her exercise tolerance is higher than her younger hound sister and she frequently goes for longer walks. However, over the course of a few months, A started urinating more often. It’s important to note this could be normal. She is a small dog and well over geriatric age. Maybe it is more difficult for her to hold her bladder, maybe it's just incontinence. No. In this case, I don’t think it was just age. Urinating every 45 minutes to an hour from every 4 is not right, even for an old dog. We looked for the evidence We checked for UTIs. None. We checked her liver and kidney functions. Normal. We even ultrasound for stones. Zip. We were left with either behavioral issues or the beginning of kidney disease (it only shows up in animal blood work after a certain amount of function loss). There was no medical evidence but something was not right. This didn’t feel like pure house-breaking issues but based on the evidence I just had to consider Affie was getting older. My dogs are on a very heart healthy home-cooked diet so high protein, low fat. Unfortunately, the kidneys hate high protein. I researched a new balanced diet that favored both the heart and the kidneys. And then it hit me. Yogurt. Before I go on, let me preface this by saying I do not think yogurt is bad for the kidneys and when adding anything in larger amounts it is best to talk to your doctor. Article after article agreed yogurt could stress already-compromised kidneys. Yogurt is high in phosphorus and protein; two things kidneys don’t like. We’ve always given our dogs a tablespoon of yogurt after their afternoon meal for its probiotic goodness. Affie also gets a yogurt snack before bed. There was indeed a reason! Without realizing it I was giving her more yogurt than probably was good for her. I stopped it completely and within days her urination returned to normal. I was stressing her kidneys, which in turn increased her urination. Aha! There was a reason. Her kidneys were healthy but just old and even that small amount of yogurt stressed them out! The mystery of seronegative RA I return to the age-old question, do I have RA? My blood work is normal and my x-rays are beautiful. Given my symptoms, I would have thought I would see some damage after eight years. I asked my rheumatologist and he said we’ve always been very aggressive with treatment so it’s quite possible I won’t see the damage. Do I have RA? I don’t doubt there is some inflammatory response because I can feel there’s something not right. There is no evidence pointing to RA. Is this just a phase and I wake up one day completely “fine”? Maybe but for now, how do I figure out what’s wrong with me? [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] 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.” [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] One of my favorite summer shows is about a concierge doctor in the Hamptons, New York. In one episode, a patient spends his entire adult life with a MS diagnosis; he even starts a foundation with the tagline “you are not your disease.” He meets the main character who notices some red-flags, runs new blood tests and finds out that in fact, this man does not have MS but Lyme disease… What is seronegative RA? I have sero-negative rheumatoid arthritis. I have the clinical symptoms of RA (swelling, joint pain, stiffness, and others) without the blood work to support them. I have beautiful blood. It is generally hearty and vibrant with the exception of some fluctuating white blood cells. I drink loads of water before every draw so I may not know my true sanguine nature. I do however want to feel better about getting stuck with needles so I do compliment my hemoglobin! I’m not sure exactly how I feel about healthy blood work. Every time I go to a doctor they check my blood and discuss my diagnosis. They ask me how I’m feeling, what symptoms I have and through a process of elimination always come back to RA. There are a lot of unanswerable questions like: Lack of supportive bloodwork for RA I am exposed to animals so I am consistently tested for Lyme and other titers, all of which come back negative. We discuss different autoimmune conditions as symptoms arise and always cycle back. Why? I wish I could tell you. “Do I have RA???” I don’t experience too much swelling, even during bad flares. I don’t have any joint deterioration (yet, at least). I don’t even get fevers often – the telltale sign of an active immune system- or “normie” sick. Doesn’t sound right, does it? Experiencing symptoms of RA Here’s what does. I have joint pain; stiffness and my darling hinges lock up towards the end of the day. I do get some noticeable inflammation in my fingers and toes and I respond to medication. Sure, I am on some blanket autoimmune ones like methotrexate, prednisone and tramadol but I do well with specific biologics like Orencia. I feel like this class of medication wouldn’t be effective if I didn’t have RA, right? Possibly but, a lot of these biologics are effective in treating multiple diseases. I often wonder, why RA? What specifically about my condition screams RA? Is it the namesake joint pain because I certainly don’t have the inflammation to back it? Is it all in my head? I firmly don’t believe this but this doubt presents occasionally. Whenever I go to a new doctor we list my symptoms. They look at their computer, eyebrows raised, and challenge the current diagnosis. Is it Fibromyalgia? Is it an odd inflammatory condition? I understand the skepticism. I look perfectly well, I pass all my tests but I feel horrible. This is probably a good time to interject I have never been accused of “faking it”. A fact I really appreciate but it is frustrating to sometimes wonder at my diagnosis. I do have an RA diagnosis I have RA. I have had diagnosed rheumatoid disease for eight years. I did not disclose it at first but eventually incorporated it into my online persona. I became comfortable with it. Everything I do with my hobbies keeps this disease in mind. I feel like I have it, but what if I don’t? I don’t dispute I have an autoimmune condition. They all present pretty similarly. Who am I if I don’t have RA? Do you have sero-negative RD? What are your insecurities? Let me know in the comments!! [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"]

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