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RA diagnosis without positive RA blood test

How many of you were diagnosed with RA but your RA blood test was negative? I have many symptoms of RA including a high CRP test. My Rheumatologist says I have some type of inflammatory arthritis and believes it is RA because my Mother had RA (but she tested positive). Any one else? Thank you in advance for your response. I'd just like to know what is going on with me. I ache all over, my knees are swollen and painful (one knee is worse than the other), my shoulders have issues that have required steroid shots, I have lower and middle back pains, my hands and feet are affected, I've had problems with one wrist requiring a brace for several weeks, and I suffer from serious fatigue. I'm just looking for answers. Thank you in advance for your response.

  1. I’m sorry you are having so much pain! Your symptoms do sound similar to many of our members, both sero positive or negative. Here is a great summary of Inflammatory Arthritis

    https://www.hss.edu/conditions_living-with-inflammatory-arthritis.asp

    As my Rheum explained to me, many of the Inflammatory Arthritises symptoms overlap, as do their treatment options. The same medications can be used to treat many autoimmune inflammatory diseases. The most important thing is to start treatment as soon as possible after diagnosis to prevent further damage to our bodies.
    My diagnosis is RA. I was sero-positive at diagnosis and now am negative. My Rheum said we need not bother to check it again. We base my treatment on other labs, my symptoms, physical exam and medical imaging. I Hope for you to feel relief very soon, Jo

    1. @RA Sam thank you for the reply. I appreciate you sharing your knowledge with us about testing. I know very little about how all of this works but I am striving to become more educated about it. I have some doubts that because I tested negative for RA then how can I be diagnosed with it - as seronegative. I am thinking it is basically by symptoms? They seem to base this on my continued high CRP levels and elevated ESR (currently - along with my aches and pains) although the ESR sometimes is normal. Anyway, thank you for your input.

    2. Hi . I want to provide a little clarification on the American College of Rheumatology (ACR)/European Alliance of Associations for Rheumatology (EULAR) classification criteria. Different aspects/criteria of the examination and diagnostic process do have different weights. You can find the criteria laid out and discussed in this article, as well as the previous criteria, so one can see what was changed and why: https://www.uptodate.com/contents/diagnosis-and-differential-diagnosis-of-rheumatoid-arthritis/print#H16. However, I want to post for you and everyone out there the criteria for easy access:
      "classification as definite RA is based upon the presence of synovitis in at least one joint, the absence of an alternative diagnosis that better explains the synovitis, and the achievement of a total score of at least 6 (of a possible 10) from the individual scores in four domains [9,10,13]. The highest score achieved in a given domain is used for this calculation. These domains and their values are:
      ●Number and site of involved joints

      •2 to 10 large joints (from among shoulders, elbows, hips, knees, and ankles) = 1 point

      •1 to 3 small joints (from among the metacarpophalangeal joints, proximal interphalangeal joints, second through fifth metatarsophalangeal joints, thumb interphalangeal joints, and wrists) = 2 points

      •4 to 10 small joints = 3 points

      •Greater than 10 joints (including at least 1 small joint) = 5 points

      ●Serological abnormality (rheumatoid factor or anti-citrullinated peptide/protein antibody)

      •Low positive (above the upper limit of normal [ULN]) = 2 points

      •High positive (greater than three times the ULN) = 3 points

      ●Elevated acute phase response (erythrocyte sedimentation rate [ESR] or C-reactive protein [CRP]) above the ULN = 1 point

      ●Symptom duration at least six weeks = 1 point

      In addition to those with the criteria above, which are best suited to patients with newly presenting disease, the following patients are classified as having RA:

      ●Patients with erosive disease typical of RA with a history compatible with prior fulfillment of the criteria above

      ●Patients with longstanding disease, including those whose disease is inactive (with or without treatment) who have previously fulfilled the criteria above based upon retrospectively available data"


      Hope this information is helpful and your rheumatologist should be able to answer any questions on what points are derived from your examination. Best, Richard (RheumatoidArthritis.net Team)

  2. I am so sorry for what you are going through. I’ve been there and still am. I am seronegative and have had RA among many other things for years. My RA bloodwork always looks good even when I’m flaring and can barely walk. They can diagnosis RA based on symptoms, ultrasound and history. I read an article a while back that said people who tested seropositive usually had a more aggressive form of the disease. But then just read that the opposite may be true. So it’s a crapshoot like everything else when you’re dealing with autoimmune diseases. Find a thorough rheumatologist who will listen to you and start you on a treatment plan. Best of luck to you!

    1. I do sympathize with you, wish you did not have to go through this. I was diagnosed 20+ yrs ago with seronegative RA and still am. Since this even as a last week other family members have been also, some eventually getting a "positive" results a year or 2 after starting RA treatment, others still seronegative like myself. Hope you are able to come to get treatment started of some sort to help you get some relief. Best to you

      1. Thank you all so much for your replies to my post. You've all given me a lot to think about and consider. I appreciate you taking your time to answer my post and give me some very good information.

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