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Are you HLA-B27 positive or negative?

I posted this forum on the AS site. I thought it was important to share here too.

HLA-B27 seems to be the main gene that they test for when diagnosing someone with AS. But it seems so many people are negative.

I am negative.

Are you HLA-B27 positive or negative?

Ali (Community Member)

  1. Hi, I am in the process of getting a diagnosis, I am new on this forum. Just heard today I am HLA-B27 negative. I had elevated CRP levels one time in the last months, but after that not anymore. What I am a bit surprised about is that my sister has, it seems from her symptoms, peripheral Spa (undiagnosed). I therefore thought it would be likely I would have the HLA-B27 gene (and then she would likely too have it). But apparently there are other genes (that weren't tested) that we might share? Anybody has the same experience of multiple people in one family being HLA-B27 negative, yet are diagnosed with some form of SpA? Just trying to understand all this..
    Thanks, Irene.

    1. I have not tested positive for the gene but have been diagnosed. I’m am also very confused about it. Spine dr says it is and PA says it all comes down to a blood test.
      Asked my neurologist, and he didn’t comment on it much but disagreed that it came down to a blood test.

    2. and - having or not having the gene can be very confusing. Here's a link to an article that may help - Wishing you well. Rebecca (community moderator)

  2. my twin is negative, and I haven't been tested. Thankfully we're identical so I know I'm negative too! I had sacroilitis on my MRI so that's how I was diagnosed

    1. Hi @RainbowJen
      Thank you for sharing. Has your twin been diagnosed as well with AS? I am also negative and diagnosed with MRI. How have you been feeling? Are you on a treatment plan?

      Sending you hugs,

      Nicky (Team Member)

  3. Negative but I am not officially diagnosed. Waiting on follow up appointment with new Rheumatologist. Haven't seen one in over 10 years after getting frustrated with the previous one. Basically, gave up on getting a diagnosis but the pain and stiffness and fatigue have gotten the better of me and I finally bit the bullet. She took 11 vials of blood and a full set of spine and hand x-rays. Just waiting on results now.

    1. this happened to me as well. At 32 I spent a lot of time with doctors and rheumatology diagnosed me with fibromyalgia because I was negative for HLA gene. It wasn’t until after I had covid really bad that I was diagnosed with AS at 48. I went into a massive flare which I now know was AS but I can see where I had flares throughout my life when I look back. It was always AS and I am angry that they did not treat me earlier for AS. It could have prevented a lot of damage that I have now.

    2. - I'm terribly sorry you had to go through this as well. I think that the HLA-B27 gene was what pushed the rheumy to believe I had AS-imaging showing all the damage, then biologics started. I understand - this damage should have been thwarted with biologics to begin with. I went through a warping of diagnoses as well - undifferentiated, then nr-AxSpa, with possibly fibromyalgia, possibly Ehlers-Danlos syndrome then AS. I also picked up a diagnosis of Mast Cell activation during the testing. What a journey! I was 45 when I recvd my official diagnosis and biologics started - had to go through the NSAIDs and DMARDs prior but the only thing that is helping me is Xeljanz, a (JAK) inhibitor. What have you tried to ease the pain and fatigue from AS? Went through a whole cycle of different ones and this is the only one helping. Hoping you are doing well enough and the disease is manageable. Rebecca (comm advc)

  4. negative and frustrated.

    1. - it can be terribly frustrating when trying to get a diagnosis of SpA - can you tell me a little bit about your journey? Hoping you're doing well throughout the holiday season. Rebecca (comm advc)

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