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Prevalence of people with RA whose tests show seronegative?

Community Answers
  • NPEOttawa
    1 year ago

    I have some similarities to you, You don’t mention your CRP or ESR (erythrocyte sedimentation rate) and I am wondering if you will share that, if you know it. I am seronegative for all antibodies and my CRP and ESR are normal. All have been since the diagnosis about 6 months ago, which was made on my entirely typical symptoms of RA. The rheumy was not surprised that the antibody tests were negative, but she was surprised about the CRP and ESR. But she does not question the diagnosis.
    But I do, or I guess it’s more that I worry about what else this might be. Especially as the MTX has worked only partly (and gives me side effects worse than the RA for a few days a wk) and the leflunamide doesn’t seem to be helping at all. Prednisone does, but swelling comes back soon after I get off it. (twice now)
    But I have no symptoms or bloodwork results indicative of other autoimmune diseases like lupus, etc.
    If there are people out there who are seronegative with normal CRP and ESR, especially if the diagnosis has not changed in a long time, or really, if it has! will you share the details? Thank-you.

  • Lindap
    2 years ago

    I was diagnosed years ago with RA but have always been seronegative. Blood work a year ago showed markers for Lupus. My rheumatologist has treated me with DMards and prednisone but nothing seems to work for very long. I have two knee replacements and substantial bone damage in feet and fingers. This last visit a new PA saw me and stated that they don’t know how to treat me because nothing shows up definitive in my blood work and I should see another rheumatologist for a second opinon. I had mentioned I would like to try biologics. I came out of there very depressed and unsure where to go from here because she suggested a clinic several hours away and I’m unable to drive far. The PA made it sound like my case is unusual so I was happy to read the article. As to where I go from here I don’t know. The Mycophenolate isn’t working and has a lot of side effects.

  • kimmy32763
    2 years ago

    I am seronegative as well. My CRP is the only indicator of inflammation that my doctor looks at to see the activity of my disease. I am on my 5th med to try to control it.

  • Sharkey
    2 years ago

    I, too, am seronegative. I am very fortunate to have a rheumatologist who agrees with the reality of the existence of the disease despite blood work. If it were not for him I would think I was coming undone! As the symptoms increase I still find it hard to understand why in the world by blood doesn’t “show it”. I am thankful for a doctor who encourages and explains.

  • janlorraine
    2 years ago

    I, too, am seronegative and have been now for five years. When my first symptoms appeared – excruciating pain in my shoulders – my C-reactive factor was very high, but since then all my tests make me look wondrously healthy. Yet, I am in terrible pain, have failed every DMARD my doctors have tried with sometimes truly awful and horrifying consequences. The only drug that helps me so far is steroids and they make me utterly crazy, emotionally volatile and unbelievably jittery. However, a systemic 120 mgs. depo medrol injection allows me to move without crying out in pain, so every now and then I allow myself to get one in spite of the fact that I also have osteoporosis in my hips and spine. It took a while, but now I don’t care what any test shows; I know how I feel and how I hurt and thank heaven I now have a doctor who believes me and takes me seriously. My advice is to trust yourself and what your body is telling you and find a doctor whom you trust and who trusts you.

  • LRoss
    2 years ago

    What is seronegative?

  • Richard Faust moderator
    2 years ago

    Hi LRoss. As this article on the topic from one of our contributors notes “It’s not uncommon for patients to display physical symptoms but not show any positive blood tests like rheumatoid factor, anti-citrullinated protein antibodies, or markers for systemic inflammation like sedimentation rate and c-reactive protein. Yet, it is possible to receive a diagnosis of RA without positive blood tests.” Best, Richard ( Team)

  • Richard Faust moderator
    2 years ago

    Hi Violetrose. As you can see from the comments, there are plenty of seronegative members of the community. Thought you might be interested in this article from one of our contributors on when blood test results don’t tell the entire story: Best, Richard ( Team)

  • HMR2017
    2 years ago

    Me too. Interestingly, my osteopath told me he is seeing a big increase in sero-negative RA patients in his practice. I wonder if there are data out there.

  • kbdwa
    2 years ago

    Hi! I am seronegative as well. My rheumatologist was slightly hesitant to list my diagnosis as RA at first, but after seeing my disease progression, did decide it was RA. Lucky me – LOL.

  • Carla Kienast
    2 years ago

    Hi Violetrose: I, for one, am seronegative. Depending on the source, estimates are as high as 40% of all RA patients are seronegative, although interestingly some previously negative people develop a positive R factor response after time. It’s frustrating because there are some doctors that won’t diagnose RA without this positive test. Hope this helps answer your question.

  • Sneed
    2 years ago

    At least two then.

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