Seronegative Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

Seronegative Rheumatoid Arthritis

Seronegative Rheumatoid Arthritis Diagnosis

A letter from a reader asks RAW about content directly addressing seronegative Rheumatoid Arthritis. Whether or not you’re a patient with negative lab results, it is important to grasp why there is not a separate category on RAW for seronegative RA.

“My reason for writing is that I don’t see a great deal of information on your blog about seronegative RA. …I know that seronegative RA is usually considered to be less severe than seropositive RA. In fact, I even questioned my diagnosis b/c I didn’t have the usual blood markers. …I do pretty well although I am never totally pain free. Like all of us, I have good days and bad. Is there any way you could present more info on seronegative RA? …I appreciate your hard work at getting the word out about this disease.”

chromatography glassware

My response about “seronegative RA”

I tried to tell her not to worry since people with Rheumatoid Disease (PRD) are not usually given a separate diagnosis of “seronegative RA,” although that may be noted in the chart. There is not much separate research or recommendations because it’s considered the same disease. (See number 3 below).

However, the new ICD-10 (International Classification of Diseases) does allow diagnosis to specify whether Rheumatoid factor is positive or not. As a matter of fact, if you open those codes, you can be diagnosed according which specific joint is affected. It looks like a coding nightmare, based on inadequate knowledge of Rheumatoid Disease. On the other hand the term “rheumatoid arthritis syndrome” is used in some cases when saying “arthritis” just doesn’t make sense. (As RAW has said before, there are no joints in the eyes or the lungs.) Most U.S. doctors are still using ICD-9, which has a code for rheumatoid arthritis of 714.0.

Does a classification of seronegative RA make any sense?

Yes, but not they way it’s being implemented. First the yes:

Yes, we do know that are some biomarkers that may one day be more meaningful in the treatment of Rheumatoid Arthritis / Rheumatoid Disease (RD). The “rheumatoid factor” is so named because it was the first antibody discovered to be associated with RD – back in the 1930’s! We are now learning that Rf is one of several biomarkers that associate with RD. The ACPA (anti-citrullinated peptide antibody) or anti-CCP turns out to be even more common in people with Rheumatoid Disease (PRD) than Rf.

Someday, we may understand the specific significance of particular biomarkers in particular PRD. We may be able to predict disease course or which treatments will be effective. We may classify subtypes of RD.

No…

Classifying Rheumatoid factor negativity as a distinct diagnosis is impractical right now

1) Rheumatoid factor is not very meaningful. Rf does not appear to be important in determining which treatments are effective. And although it was once thought to predict a milder disease course, evidence does not necessarily support that. [1-3] There is actually more than one type of Rf antibody to test, but PRD do not know which one has been tested when they are labeled “seronegative” – we’ve seen many in our community who are seronegative with severe damage or confirmed extra-articular disease.

2) Consideration of anti-CCP makes it misleading. ACPA / anti-CCP is more specific for RD than Rf, yet Rf alone is commonly considered for seronegativity, and Rheumatoid factor negativity is specified by ICD-10. Other clinicians consider a positive anti-CCP to exclude seronegativity.

3) Rheumatoid factor is not a label, but a temporary state. Rf changes over time, with a trend toward positivity. There are not TWO groups of patients: the seronegative and the seropositive. No, it is rather a continuum, and patients are at different places at different times. Sometimes seropositivity varies with treatment, and other times, not.

4) Concern for the results of the division. Since 20 to 30% of PRD have a negative Rf, and we do have evidence that “seronegative” is not necessarily a milder form of the disease, producing less symptoms and damage, I hope that the new ICD division will not be an excuse for undertreating certain patients to save money.

Tests are important, but as we’ve discussed before, they must be used as tools to help people who are patients, and never as weapons against them.

Recommended reading

FOOTNOTES

1 The National Collaborating Centre for Chronic Conditions. Rheumatoid arthritis: National clinical guideline for management and treatment in adults. 2009 Nov 15 [cited 2013 Oct 16]. Available from: http://www.rcplondon.ac.uk/sites/default/files/documents/rheumatiod-arthritis-guideline.pdf

2 Akerkar S. Rheumatoid Arthritis- crystal ball gazing. Arthritis Support Board [internet]. 2010 Jun 14 [cited 2013 Oct 16]. Available from: http://doctorakerkar.wordpress.com/2010/06/14/rheumatoid-arthritis-crystal-ball-gazing/

3 National Rheumatoid Arthritis Society. Seropositive & seronegative: What do they mean? 2011 Dec 13 [cited 2013 Oct 16]. Available from: http://www.nras.org.uk/about_rheumatoid_arthritis/what_is_ra/how_is_it_diagnosed/seropositive_seronegative.aspx

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

43 thoughts on “Seronegative Rheumatoid Arthritis

  • October 21, 2013 at 8:23 am
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    Thank you for the information on seronegative RA, I am also seronegative, I am constantly researching, but I get mixed information on whether or not it is true RA. This makes me feel better.

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  • October 21, 2013 at 10:06 am
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    Kelly, thank you as always for a very indepth response to this extremely confusing issue. We as patients are forced to deal with wrong information when talking with physicians and trying to be considered for disability. Your leadership and knowledge will one day change an archaic system I have been dealing and fighting in for 28 years. The nurses who say, “You can’t be in that much pain, your Seronegative.” The doctors who decide Federal Disability who turned me down the first time I applied due to being “Seronegative” may one day have better information as standards and science evolve. Until then, we have you as our voice and the information you supply to help us navigate these issues.

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  • October 21, 2013 at 10:56 am
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    Other forms of inflammatory arthritis are aero negative. I had several doctors tell me I couldn’t have arthritis as I was aero negative before I was diagnosed with psoriatic arthritis. I agree that clinical knowledge is extremely important.

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    • October 21, 2013 at 12:18 pm
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      Marilee, I was fascinated to discover that being seronegative actually helps prove a person does have PsA according to several of the commonly used lists of diagnostic criteria.

      My second rheumatologist, who was head of the department at a teaching hospital, was one who used seronegativity as a weapon instead of as information. In hindsight, I’m apalled that he couldn’t A: recognize PsA in a patient with a 20-year history of psoriasis, and B: not recognize that my having been on prednisone and methotrexate for a year with side trips into Humira & Enbrel might have skewed the labs too.

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    • October 21, 2013 at 1:57 pm
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      Sorry – not sure how sero-negative became aero-negative.

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  • October 21, 2013 at 11:00 am
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    Thanks for this post. I have been wanting to submit my own story for so long (one of “seronegative RA”) but am always so ill that I cannot do it!

    The label “seronegative RA” and the negative labs have been used as weapons against me by many docs through an intense battle for my life. I never could have predicted how negative tests could be used against a patient, but they are.

    As a teenager, I tested positive and was diagnosed with Lupus and RA. Later in my life, labs were negative.

    In the past two years, I became much more severeIy ill. I was turned away from many doctors with this simple logic they all seemed to have learned from a textbook in medical school: “Seronegative RA is usually mild. You are very ill. Therefore it cannot be RA.” They would refuse to treat me, citing “liability” even though I am the poster child for RA, mixed connective tissue disease, Lupus (especially according to symptoms as described on RA Warrior–I am still missing the apparently ESSENTIAL SWOLLEN HAND JOINTS, another fact used against me often!).

    I finally sought help through a doctor in Israel who researches seronegative RA and writes about the necessity for aggressive treatment. This doctor who never met me wrote back to me and has helped me to get medical care in the U.S. He is still a valuable aid to me, as I still fight this battle.

    There is an important and little known underlying possible cause for seronegative RA or other auto-immune diseases for some patients–common variable immune deficiency (CVID). If a patient is also plagued by chronic infection (sinus, bladder, bronchial, etc.), allergies, asthma, and overall poor health, they might ask to have their immunoglobulin levels checked. When a person has CVID, their IgG, IgA, IgM, etc., might be low. They might not be making antibodies. This is very important when being tested for RA and the other diseases, since they are measures of antibodies–something someone with CVID can’t produce!

    It is common for people with immune diseases to develop auto-immune diseases. This I have learned through my own research, not through contact with doctors. Sadly, doctors remain largely unaware of these illnesses. Note the misery of folks with CVID and other invisible illnesses (on sites such as Daily Strength) as they fight alongside RA patients to get doctors to acknowledge their suffering.

    It is possible to get infusions of IgG (either IV or subcutaneous) to help combat CVID, and this helps bolster the immune system, eventually improving some of the allergy and infection symptoms. And, most importantly to a person who also has RA, it allows a person like this to be able to handle the immunosuppression of RA meds a little better. I myself have to work for a balance of treating seemingly contradictory conditions–immune and auto-immune conditions–and this is a tricky battle since the treatment for each can worse the other.

    I was just released from the hospital after a week of being treated for organs inflamed by the RA. As usual, it took quite a bit of convincing to get the ER docs to accept what I was saying–that my kidneys and liver were inflamed–since they could not SEE it on a scan. Eventually I was admitted. I received fluids and pain meds for days until they finally agreed that if I would accept the liability they would try my idea–a few days of stress dose Prednisone on top of my normal dose. It worked, and I am now home. I learn something every time from these experiences, and was happy to have some doctors remain open and flexible enough this time eventually to allow patient input into her own care.

    Wishing you all the best in your efforts to get medical care!

    This site is SOOOOOO valuable for all of us!!!!! It has kept me from giving up through many a dark hour of feeling abandoned by doctors.

    Thank you!

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  • October 21, 2013 at 11:23 am
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    Thanks for posting this. Long ago I was seropostive. That was how the diagnosis was initially made. Since my symptoms of gotten under better control with anti-TNF use I have been seronegative but continue to have some pain and on-going damage (although much less than before). Thankfully my doctor is one who believes that seronegativity is not a sign that you are necessarily in remission.

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  • October 21, 2013 at 1:34 pm
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    Also seronegative …. does anyone else have any issues with platelet abnormality since the onset of their arthritis? I have and have only heard of one other person with this. I have developed a rare form of haemophilia since my arthritis disease became active. Would really like to hear if anyone else has any knowledge of this.
    Thank you.

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    • October 21, 2013 at 2:19 pm
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      I have occasionally had some troubles with platelets (and anti-phospholipid antibody syndrome–a clotting problem), but not constant and never with a clear explanation.

      Consistently, though, I have had other blood abnormalities, and they have became more pronounced with the worse RA onset in the past two years.

      For years, my hemoglobin climbed high (hemochromatosis ruled out), reduced only by having blood drawn for labs. No doctor, including two hematologists, really has had an explanation.

      At the same time of having high hemoglobin (which in itself suggests a high amount of iron), I had the strange situation of becoming more and more anemic. My serum ferritin declined to the point of my needing iron infusions despite the high hemoglobin number.

      The iron infusions got my iron to the normal range for a few months as I was beginning to flare horribly. At that point, my serum ferritin climbed very high, and remains high almost two years later.

      Some of my doctors accept that as my “one positive lab result,” since high ferritin is an acute phase reactant, indicating acute phase of inflammatory illness. I never have elevated sed rate, positive RF, etc., at all these days. I’ve never gotten a good understanding of it either…..

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    • October 21, 2013 at 6:02 pm
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      Yes, Louise, I have. While mine is unpredictable and not nearly to the degree you’ve experienced, I’ve had a couple of workups come back with abnormal platelet counts. They always retest me a month or so later, and it’s usually fine after that. It was initially attributed to being a possible side effect of the MTX, but I’ve had one lab come back abnormal since I’ve stopped MTX. Shrug. Yet another of those things that isn’t explained, but seems to be a theme (as far as I know…)
      I’m also seronegative. In fact, with the exception of a platelet abnormality here and there, all of my “usual” indicators are always perfect. I’ve never had an RF, anti-CCP, or any other inflammation indicator pop as abnormal. I’m extremely lucky that my rheumy treats based on my reports and what she finds on my joint exams. I’d been tested before by a PCP (whom I no longer see) and was told there was no way I could have rheumatoid disease simply because my RF was negative. It never ceases to amaze how many doctors aren’t current on standards of diagnosis.

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  • October 21, 2013 at 5:57 pm
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    I am sero-negative, and was diagnosed as having RA about 6 months ago. I am currently taking MTX and Humira ( as of this month). My rheumatologist has not been overly concerned about the sero-negative part, other than initially looking towards psoriatic arthritis. My pain began in my shoulders and hips about a year ago. In the spring my finger joints became painful and swollen, I have nodules now in my hands and feet, and very bad fatigue. I am thankful to have found your site and all of the wonderful information. Thanks for this article.

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  • October 21, 2013 at 9:11 pm
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    I am also sero-negative. I was pleased to hear my rheumatologist training in a new rheumatology Nurse Practioner during my last visit. He said, ” She has a negative RF and normal inflamatory markers but definitely has RA. She has synovitis and has gotten better with aggressive treatment, so don’t rule out RA.”

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  • October 21, 2013 at 10:41 pm
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    I’m glad to hear from so many others who are sero-negative. I have always been sero-negative (RF, ESR, etc) and spent about 9 months fighting with my PCP until I finally got to see a Rheumatologist. My primary insisted that I could not possibly have RD whereas my rheum took one look at my hands and said of course you have RD, you can’t even see your knuckles! I am a health care provider myself and if it took me so long to get help then I shudder to think how people with no/minimal medical knowledge cope. I’m sure there are many frustrated patients out there suffering with all of the symptoms that we all have. I am now on Actemra (failed MTX, Enbrel and Xeljanz) and keep hoping for some evidence of it working – it’s been 6 months and I’m not optimistic.

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  • October 22, 2013 at 11:13 am
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    I have never heard these terms before. My Doctors have never said those things to me. Of course when I was able to see a Rheumy They talked down to me, talked so fast I couldn’t keep up. No one would go with me to take notes. They still thought it was silly.
    Thank you for sharing it. I’m not sure which one I have. I have RA and Lupus. And I am in constant pain. It just goes from a 3-10 depending on the day, the time and what is happening.
    Thank you everyone for your comments, it has helped a bit. Feel like I know more thing about this super weird disease.
    🙂

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  • October 22, 2013 at 12:15 pm
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    Thank you for this article. I’m another sero-negative but I’ve been extremely lucky. My PCP initially diagnosed RA and then back-tracked when my bloodwork came back “negative”. However, she admitted that she was in over her head (her exact words!) and sent me to a rheumatologist. He explained sero-negativity to me and also to my PCP. They are now working together to treat me.

    My heart just goes out to everyone who has problems getting treated. I wish everyone here was as lucky as I.

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  • October 22, 2013 at 3:02 pm
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    Thank you Courtney for sharing. Your situation is actually different to mine. What a strange disease this can be!! x

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  • October 23, 2013 at 7:57 am
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    I’ve had no problems getting appropriate treatment in spite of being consistently RF and anti-CCP negative. However, I had a classic presentation in other ways – grossly obvious synovitis, bilateral hand involvement, erosions on x-ray, very high ESR & CRP. I think if my RA hadn’t been so obvious clinically, the seronegativity issue would have been much more of a problem.
    One thing I’m curious about – my rheumatologist has hinted that there may be differences in the way seronegative RA responds to drugs. If I understand correctly, seronegative patients often don’t respond to methotrexate, and may respond unusually well to Actemra. (That’s certainly turned out to be true for me.)
    Anyone else heard this from their rheumatologist?

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    • October 23, 2013 at 8:57 am
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      Hi Jeff, thanks for the discussion. Wow you do have a “lucky” presentation of disease visually, don’t you?
      As far as the methotrexate question, I haven’t seen that idea borne out in studies, on the whole. Seronegativity is often temporary, so I’m not sure it will be the main way we divide up patients into groups one day – it’s just one piece of the puzzle. I’m seropositive btw, and am a non-responder so far – meds don’t seem to make much difference in symptoms. Of course I can’t measure whether they help with unseen disease progression.

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  • October 23, 2013 at 6:57 pm
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    I am sero-neg. I am on merhotrexate injections, Plaquenil, & Actemra. I tried Enbrel, Humira, & Orencia & they didn’t do much for me. So far, Actemra is the best but I’ve only had 4 doses-everyone is different.

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  • October 24, 2013 at 2:02 pm
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    Ok hi…so I’ve never done this before but need some advise. I’ve been diagnosed with ra and fibro even though my blood work and x rays always come back normal. Although it’s been years since I had any X-rays. My mom has the same diagnoses. Although her blood work is not normal. Not sure which came back off if it was rf factor or something else and probably would not remember anyways! 🙂 so for years we were both told it was tendinitis or I was often told I was to young to hurt that bad. I’m now 35 but started having issues earlier then 16. My memory is awful so don’t know exact age.
    My question is we both feel like something more is going on with us. We have symptoms that our rhuemy. just looks at us funny about. I’ve always wondered if we could have lupus also. I get blisters in the sun and raised splotches on the crease on my elbows, a rash right under my eyes but not what looks like a full butterfly rash and tightens and pain around my lungs that feels like a vice, excessive sweating that is embarrassing, sweaty even though I’m cold or my feet and hands are like ice. Tingling in my hand and feet fainting spells etc. the list goes on and on!
    I don’t dought the fibro and ra diagnoses just feel like that’s not everything.
    Does anyone have ra and lupus? Any opinions on what else could be going on? I want to go to my rhuemy with educated questions and I know that there are a lot of things that could be going on. Lupus just feels like the right answer. Being seronegative opens up doubt in my mind and I’m always afraid that I’ll be told again that I’m to young to hurt this bad or that I just want more pain meds. Which I hate taking!! I even almost lost my right to pain meds because I didn’t have enough of them in my system! And that was because I ran out right before a holiday and could not get to docs office to get refill. Thought that was CRAZY! Sorry off subject but really upset me to be treated like an addict because the meds weren’t in my system!!!
    Anyways sorry if this post is rambling and confusing. There is just a lot going on in my body and it hurts to type all this out! 🙂
    Any advise would be helpful about well anything and how to approach my doc about lupus or other conditions that might also fit.
    Thanks!!! And may all of you have a healthy day!!!

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  • October 31, 2013 at 12:40 pm
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    I have been sero-negative for 4 years now, but based on the 2010 ACR / EULAR Rheumatoid Arthritis Classification Criteria, I unequivocally have RD. I have not officially been diagnosed with RD but am being treated as if I have RD. I have been on hydroxychloriquine, methotrexate, Arava, and tried Humira (with a bad reaction). Both methotrexate and Arava have helped somewhat but I am off both currently. I continue taking hydroxychloriquine. I have been diagnosed with Hashimoto’s and Sjogren’s based on a lip biopsy. All my blood work to date have shown no markers for RD (except for one elevated ESR). My platelets have typically been higher than normal except for when I was on Arava. I have recently had a test showing Immunoglobulin M Deficiency (or low IgM) though I was told that DMARDs can cause this and I didn’t have a baseline done prior to starting meds. I don’t typically have low-grade fevers, but do have synovitis in multiple joints, bone edema in multiple joints, and may be showing bone erosion in one wrist. I have pain in every joint. I also don’t have the typically sausage like swelling in my hands and feet. My pointer fingers are showing some changes where the PIP joints look like they are dropping on one side. All my fingers are swollen based on having to switch around my rings but specifically in the PIP and DIP joints. I have pain in both pinky fingers at the MCP joint. Both second to big toes also are swollen and have pain throughout my feet. I have cartilage damage in many of my joints and at 47 need a total hip replacement. I started having pain in my left hip in May (groin pain shooting down to the thigh and into the inside part of the knee) and by August I was pretty much bone on bone. My eyes have been affected and have been treating the inflammation with band-aid contacts. I am constantly amazed that at this day and age we are still so far behind in technology that patients still can’t get the answers needed for treatment.

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  • October 31, 2013 at 10:46 pm
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    Well, color me confused. I was told two years ago by a rheumatologist at a highly rated tertiary center that I have seronegative RA. I assumed that was the end of the story. Now being told by a different specialist that my diagnosis is incorrect. She is leaning towards an autoimmune something-or-other, but she is absolutely certain that I do not have RA. The specialist is running more tests to try and figure out what is actually going on.
    My mind is blown. I am not sure which of my doctors to believe at this point. Note that this other specialist does not deny that seronegative RA exists, she just feels very strongly that a lot of people are mislabeled with it, when in fact a different autoimmune label might be more appropriate. I feel completely unmoored and lost at this point.

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  • November 7, 2013 at 2:38 pm
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    I am also negative. My knee started to swell 23 years ago…for no good reason. Finally my ortho did a exploratory scope. He found nothing but a lot of inflamed tissue which he sent for biopsy. Enter diagnosis.
    I am curious if any of you people who are negative have ever had a Anti Nuclear Antibody (ANA)test. Apparently it is not routinly run. Mine is positive. This has also been referred to as the “Lupus Test” and unfortunately my 23 year old daughter also has positive ANA and now a Lupus diagnosis.
    My rheumatologist said based on the biopsy and my history she would stick with the RA diagnosis over Lupus. The ANA apparently is a marker for autoimmune disease and as you know, there are many of them. So curious if any of you have had the ANA test and, if so, what were the results.
    Also, I am curious if any of you who have a negative RA factor have any other autoimmune diseases? I am the lucky recipiant of two that I know of…Rheumatoid Arthritis and Crohn’s Disease. Wondering if anyone else has more than one autoimmune disorder.

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  • November 11, 2013 at 7:35 am
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    I have been up and down, testing positive one year and negative for another. I’m currently seronegative, but eventually, that will change for a while, and then I’ll be seronegative for a while….

    As my doctor said, “Your pain, inflammation, and disability isn’t going away and coming back, but your antibodies always are. The patient’s physical changes matter more than their bloodwork.”

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  • November 16, 2013 at 6:02 pm
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    I’ve never posted before, but I’m feeling lost right now and I need some advice. Last year, I had a severe bout of gastritis at Thanksgiving. It subsided but I never really felt better, and then the joint swelling and pain began. It started in one finger and then proceeded to develop in the same finger on the other hand (also, strange stabbing pains in my toe joints and swelling of my feet). I also had low grade fevers and aches as if I was getting the flu, but I just kept chalking it up to stress (I’m a teacher, so I tend to blame everything on stress). When school was out in June and I was feeling worse, I went to see a Rheumatologist in my home town (Everett, Wa), and he proceeded to do blood work and x-rays with the assumption that I have RA (he treated me with steriods and anti-inflammatory drugs). I felt a little better, but my stomach issues continued and my blood work came back negative for everything (lupus, crohn’s, RA, etc). I was put on Hydroxychloroquine and told that I either have sero-negative RA or inflammatory osteoarthritis (I am 49 years old). I can’t tolerate a high dose of the chloroquine (when I take the recommended dose, I have severe diarrhea, which isn’t an option when you are a teacher and do not have access to the bathroom on a regular basis). One thing that does keep coming up in my blood work is that I have a pretty consistent low WBC count, and slight anemia that can’t be traced to B-12 or iron deficiency. Well, here it is November and I still don’t feel well, and the pain is difficult to deal with when I have a flare (not to mention the exhaustion and mental cloudiness). My current doctors are at a large clinic in my city, and they know that I have had a long term issue with a panic disorder (since I was in 2nd grade), so every time I return to the doctor it’s the same questions about stress (No, I’m not stressed at all <>. I feel terrible and my principal is talking about my performance issues because I have the class from Hades in the afternoon and sometimes the pain is just mind numbing). I am seeing a Naturopath and I’ve cut out all gluten and dairy from my diet as well as taking tons of expensive supplements (because teachers make so much money, you know <>). The money isn’t important because I would pay anything to feel better, but I don’t know what to do at this point. My gut feeling is that the rheumatologist is giving me the run-around, and that I need to do something now, before I lose my career. If it were really all stress related, then I would’ve felt better in the summer, but I didn’t and while I’m sure stress is one piece of the puzzle, it doesn’t explain the timing of the flares. I try to exercise (walking and swimming) and my diet is good, so now what? Should I try to see a doctor who specializes in inflammatory conditions in Seattle? Taking a leave of absence from my work is not an option, and even though my afternoon class of 8th graders (predominately boys) is not ideal, I do not want to leave my job (It might help if my admin would admit that my class is not balanced and that the student behavior challenges are not all my fault. She could offer support in some manner, instead of blaming me). I need to feel better ASAP, which doesn’t seem to be realistic, and I also need some form of diagnosis so that I may request help from my school district. Any suggestions from those of you who have gone through this process? Also, any suggestions for doctors in Seattle?
    Thank you for allowing me to vent a little 🙂 I am scared and finding this website has been a godsend. Thank you for everything!

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    • November 17, 2013 at 10:01 am
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      I don’t want to seem like I know much about what it takes to practice medicine in a pretty difficult field like rheumatology, but having been sick for a long time and having seen a multitude of physicians, it does seem to me that a good rheumatologist ought to at least be able to distinguish between seronegative RA and an inflammatory OA. I would note that doctors have a tendency to be completely unable to admit when they don’t know what to do with you, so if your instinct is that you are getting the run around, trust that instinct. I would keep looking for a different doctor, but you may also need to consider traveling out of the Seattle area to get help. I have a lot of the same symptoms you have, plus muscle weakness and muscle fatigue, and have been told to consider the possibility that I have an ion channelopathy (you’ll have to google it, it’s not something I could briefly explain in a post). This is a very difficult condition to get diagnosed because not that many doctors know anything about this category of disease. Channelopathies can be autoimmune in nature, and I have been told by a neurologist that they can contribute to RA-type symptoms that are seemingly unrelated to your muscles, like joint pain and inflammation, general (non muscle-specific) fatigue, etc. I have been looking for help for 5 years and still don’t have a complete picture as to what is going on with me. I’m not trying to sound discouraging, I just want to warn you that you may have a long road ahead and you need to be prepared for that. Good luck.

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  • November 17, 2013 at 11:07 am
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    Hi Amy,
    I can feel the stress from reading your letter, so sorry. Stress doesn’t help most diseases and from what I found with Rheumatoid Disease you get a jackpot of symptoms when stress is bearing down.
    My quick story is that I’ve had the disease for 28 years and have had many different issues with odd symptoms that I’ve gone to world renowned specialist, who put me through some extraordinary testing. I’ve swallowed camera’s, had suction cups adhered to my eyeballs and when the specialists rule out all horrible life changing diseases they tell me to go to my local doctor and close the door on our relationship. This has happened too many times to me. When I get a new symptom today I’ve changed how I manage my illness. I stay local and go to the people who know my condition which usually falls in the autoimmune/RA area plus anxiety/depression. Anxiety was with me from the beginning, it came with my job as a Cosmetic Executive, a single mom who had to work, leave a daughter at daycare and travel 200-300 miles a day and was recently diagnosed with RA.

    A few years ago out of no where, I presented with horrible diarrhea, extended abdomen and ran to a the “Specialist”, who did all their tests(this is where I swallowed the camera,up scopes, down scopes, C diff, other bacterial infections) to rule out everything they could. This specialist called me and said “I don’t know what you have but there’s nothing I could find, have a good day.” and I said “Wait! You mean to tell me you can’t help me?” and she said ” I can’t tell you what the issue is, I’m sorry, bye.” It was an enlightening and amazing phone call when you are told by a representative of huge institution, by a doctor you sought out for help because their background matches your issue and they throw you out of their practice saying what was stated above.

    Bottom line was, I was using the bathroom up to 25-30 times a day and I was tired of it. Change in diet, Dietician, Nutritionist, Allergist; all couldn’t help my issue. I went to my local Gastroenterologist who has known me, told him my story and we started to brainstorm. There was a medicine he prescribed (after several others that didn’t work) this one was to lower cholesterol and it binds people up that use it. It hardly has many side effects but one was constipation. So, we tried it and it worked. I now take 2 a day and it has helped me immensely. The name is Welchol and it has made life easier for me, it’s not perfect but it helped. Understand, I had all the testing to rule out other issues, I stay away from my trigger foods and drinks, and we felt confident this one issue was autoimmune (IBS).
    I hope my story might help you. Bless you for being a teacher and good luck in your venture to help your condition.
    All the best, a fellow warrior!
    Janette
    Hope my story helps you, I feel for you.

    Reply
  • November 21, 2013 at 11:29 pm
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    Monica, you might find the following publication helpful. It is published by my employer. Go to http://www.igliving.com and check out the blog posts and articles there. You can subscribe to the print or electronic versions. Many excellent articles on CVID and other immune disorders.

    Reply
  • November 22, 2013 at 7:28 am
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    Hi, I am from Canada and also have seronegative RA, I have had one positive ANA test but was told it was a false positive during my first screening for RA. My family doctor has been treating me with MTX & prednisone. I had a second screening for RA as my symptoms continued to worsen which is when I was told that I had seronegative RA. Finally someone who believes it’s not all in my mind. Our healthcare system where I live is so backed up, I may not get to see a rheumatologist for another year and it’s been six years already!! My symptoms continue to get worse and my quality of life continues to go downhill. Each day comes with something else that I can no longer do because of my RA. My family physician cannot prescribe Humira or any other biologics which I expect would help aleviate my symptoms. I feel like I’m in limbo and have no alternative except to suffer in silence. I guess I just needed to write this down to vent my frustration with my situation to people who actually understand what I’m going through.

    Reply
  • December 10, 2013 at 9:35 pm
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    I have CVID and brutal joint pain. I have been at this for three years..pain started in the hands & wrists. It spread to my limbs, very symmetrical…very RA. All my bloodwork was negative but as pain got worse, visiting doc put me on MTX…got pneumonia.
    Weather changes kill me.
    This led to another pneumonia & an experienced doc who found low IgG. Sent to a specialist and now do SubQ Hizentra 5x week. Then another pneumonia. Three and a half months later my joint pain is at an all time high…xrays clear…referral to an internist. Ig levels are up.
    Hopefully this figures things out. I have seen two rheumies & a neurologist…MS wrong diagnosis…I think it is seronegative RA.
    How long did it take to get seroneg diagnosis? Anyone know of any good articles on Cvid and RA???? Any input would help…thanks!

    Reply
  • December 21, 2013 at 5:27 pm
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    Amy,
    I was diagnosed in 2008 and am now 68. You symptoms are familiar. I have a caring rheumy in Bellingham but feel I need to get a 2nd opinion in Seattle and have been recommended to Seattle Arthritis Clinic.
    I started on MTX, then added Enbrel (worked well, but rash), then switch to Cimzia – another anti-TNF blocker (worked well, but terrible excema), now Orencia infusion with MTX and leflunimide (arava).(a cocktail of drugs) The Orencia doesn’t work but when she added the arava things started to calm down. It’s been 6 months of continual swelling in wrists and knees since switching to Orencia.
    Medicare throws a wrench into paying for these drugs as they have to be administered in the office to be covered… so all self-injectables are out and all anti-TNFs are out because of rash. My options are narrowing and now we will switch to Rituxan (a B-cell blocker) next month.
    It’s scary. Last year when I asked about checking with the Polyclinic in Seattle she said “what can they tell you that I haven’t?” Intimidating. so I’ve just gotten this rec. from a young gal who has Lupus and she loved her doctor at Seattle Arthritis Clinic.
    I guess I’m saying – hang in there – go to a RA specialist and get that swelling down! It’s eating your bones away. Biologics are a godsend – I wish I could keep on one for longer than a year without an allergic reaction. I agree it’s nice to stay local but sometimes you can’t when there are few options where you live.
    Thanks for posting, everyone.
    AnnaD

    Reply
  • December 21, 2013 at 5:37 pm
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    OH –
    And I’m also seronegative.
    FYI re RA tests:
    All these tests where done in 2008 when I was first diagnosed,
    test for the gene – HLA-b27 = yes
    C-Reactive Protein = 64
    ANA – antibody to nuclear antigens = neg
    ANA pattern by IF = neg
    ANA Anti SSA by FIA = neg
    CCP antibody <16
    igA antibody not done (i should ask about it)
    Rheumatoid Factor = neg
    SED RATE – ESR = 60
    I've been Gluten free (to curb inflammation) for almost 3 years, lost 25 pounds and I'm not goin' back!
    Stay calm during the holidays everyone,
    AnnaD

    Reply
  • April 2, 2014 at 1:54 am
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    I have also SERONEGATIVE RA since 9 years. because of not getting rightly diagnosed my RA meds has stopped for 6 years 7 doctors comment that i don’t have RA. my condition gets worst day by day in which becoming death for me closer. luckily i get good rheumatologist who treated me in time, and save my life. She tells because of getting meds stop my all over joints became Deformed & Damaged. I have not currently any joint left UNAFFECTED.
    SERONEGATIVE RA REALLY EXISTS, EVERY DOCTOR AND PATIENT MUST KNOW THAT.

    Reply
  • June 17, 2014 at 5:21 pm
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    I was diagnosed last fall with seronegative RA. Did some more testing and such and now my regular physician agrees. I am so opposed to the drugs prescribed for RA and basically most Auto immune…My mother was diagnosed in her early 30s with MCTD. I have seen what the drugs have done to her and the life she lives now. I can’t see it happening. I also have a hard time being treated for something that tests are showing negative. I mean. If you go in and are tested for HIV and it comes back negative several times, are you still willing to take the meds anyway to treat it??? Maybe I am just stubborn. I have been to one specialist so far and am asking for a referral to another for a second opinion. I have all the symptoms but that is it. Xrays show no damage(perfectly normal)and all blood work except the ANA (1:160)is a low positive but a positive. Extremely frustrated especially when I search the web to find a lot of sights won’t even recognize the seronegaive.

    Reply
  • October 24, 2014 at 10:29 am
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    It’s so good to have this information for all of us sero negative. My first rheumy classified my condition as Fibromyalgia, and sent me to a pain clinic. Not being satisfied, (Since I had two toes that had turned into fierce looking ,red, puffy sausages, and fingers that were twisting, knuckles were red and knobby looking). Second rheumy, on his laptop, tap a tap, tap. Blood work says no inflammation, so you have sero negative RA, and Fibro. After two years and all the traditional meds, I kept getting worse. He threw up his hands and sent me to the pain clinic. Meanwhile my clavicle seemed to be growing, hurt lterribly. My imagination??? So rheumy #3… She looked at my records, talked to me, touched me, talked to me some more. We are not doing all those things that didn’t help, let’s have a bone scan with dye done…Surprise!! It showed inflammation in many parts of my body, especially my clavicle. I have now been granted the privilege of starting on Humira. I have only taken one dose, but happy to be on it and trying something different. I’m not crazy and imagining things!! I’m hopeful that treating my inflammation will also help with my Spondylolisthesis. After 2 lumbar fusions, perhaps being on the Humira will be helpful there as well. I’m not asking for miracles, just someone to listen and understand.

    Reply
  • November 2, 2014 at 8:35 am
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    Hi Gwyn,
    I’m late to this discussion, and I don’t have much to add personally, because I am seropositive for RA. However, in chatting with a rheum once, he said that he treats aggressively to clinical presentations, including his seronegative patients. However, he did admit, that whenever he has someone who doesn’t have positive bloodwork, he wonders if he might be missing another condition or if there is a more appropriate diagnosis that doesn’t fit into any specific autoimmune category. I thought your comment was interesting in light of his remarks. I know that so many have had to fight so hard for treatment, but I can understand how it has to be an extremely very careful diagnosis if it’s one of exclusion. Hope you are doing better, now.

    Reply
  • November 21, 2014 at 10:59 pm
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    I have been diagnosed with seronegative RA since fall 2010. Even though I do not have positive blood values I have tremendous amount of joint and bone pain. I was initially diagnosed by a brilliant internal medicine provider who diagnosed my conditioned based on clinical presentation and by being familiar with me as a patient. I am now being cared for by a board certified Rheum. And a pain specialist, cardio., lung MD. The RA has not been kind to me. I have been on large doses of Mtx, plaquenil, I also was on Enbrel for a yr but it stopped working. I was switched to infusion Orencia for 10 mo without any improvement so I had my last treatment today. I was tried on two months of Arava but elevated my liver enzymes, so I need to stop that. The unrelenting pain can sometimes just stop you in your tracks. I am a professor and I love what I do and now I am actually considering the very real possibility that I may have to go out on disability. I even have to wear two wrist splints due to bil carpal tunnel, without the splints my hands become numb during the night and i am not about to have them surgically repaired.
    So, if anyone comments that seronegative is less of a disease progression they are crazy. I also have minor lung involvement that needs monitoring. My life is such fun these days with my social calendar full of MD appointments
    This is a great blog. I have just found this tonight and I have learned so much. I have been told no way does RA impact the DIP joint but it absolutely does. Mine feel like they were sliced off I have to keep looking at my fingers to see if they are still attached. Thanks Aluce

    Reply
  • January 1, 2015 at 6:44 am
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    Im have a seronegative RA diagnosis. MTX, Leflunomide, Humira all failed to improve my chronic condition even a bit. Last month my Australian Rheumatologist moved me onto Rituximab/Mabthera…. It hasn’t done a thing. Im in Germany now with my girlfriend and visitied a Rheumatologist friend of her fathers for his opinion… And he was freaked out that a Rheumatologist would prescribe Rituximab (high risk side effects) to seronegative RA as this is against protocol in Germany due to it showing placebo level improvement levels only… With the high side effect risks. So… Just a word of warming to you seronegative RAW’s out there… To reconsider this drug if your Rheumatologist recommends it. Apparently it produces ‘statistically significant’ improvement for seropositive RA.

    Reply
  • August 30, 2015 at 10:14 pm
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    I was diagnosed with sero negative RA/nset Adult Stills Disease, come to find out it was a horrible misdiagnose!

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  • September 14, 2015 at 10:31 am
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    Nice to know i’m not crazy. Of course, it’s taken me 11 years to accept the fact that I have RA and Sjrogren’s. Doing alright on Methotrexate, Plaquinil, and small dose of Prednisone. God bless ya’ll. Reading your posts makes me feel I am not alone.

    Reply
  • February 7, 2017 at 8:38 pm
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    Kelly,
    I have had multiple diagnosis from several doctors(4 Rheum and 5 Neuro) over the years for my joint and muscle pain. They range from CIS MS to OA,RA and Fibromyalgia. The problem is with no blood markers each doctor refutes previous diagnosis and assigns another one and then changes it back again. I have pain in multiple joints (and muscles)all over my body. The amount of pain, type, severity and number of joints affected varies. All my pain is bilateral.I have noticed that my ankles have sunken in between my Achilles tendon and my ankle bones both sides, both feet. I have Raynaud’s as well.
    I have tried Cymbalta, Savella and Lyrica, DMARDs and NSAIDS and all I got was 50 unwanted lbs. Last doc said, “You can trial Methotrexate for three months on the slim chance that it may be autoimmune and were not able to detect it.”
    I was wondering if anyone has ever tried genetic testing such as 23andme.com in the hopes that it would help with their diagnosis? If so, was it helpful?
    Also, should I incur the side affects of Methotrexate without significant confirmation or joint damage. I am 51, single with a 11yr old trying to work full time and manage my health.

    Reply
  • Pingback: Biomarkers in Rheumatoid Disease | Rheumatoid Patient Foundation

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