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Is Anyone Hla Negative And Still Diagnosed As?

A MySpondylitisTeam Member asked a question 💭
Coeur D Alene, ID

My doc tried to get me in a drug trial but the mri didn’t show inflammation and hla b27 was negative so I don’t qualify. Now I’m stressed that this info will make him rethink my diagnosis. I was happy(sort of) to finally having an answer to why I’m in so much pain all the time and get on track to feeling better(sort of). His diagnosis was based on deteriorating of the si joints caught on an X-ray.

September 8, 2020 (edited)
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Answer Summary

Members rallied around the original poster's concern about being HLA-B27 negative, with many sharing that they too tested negative yet still... Read more

Members rallied around the original poster's concern about being HLA-B27 negative, with many sharing that they too tested negative yet still received a spondylitis diagnosis based on imaging, symptoms, and clinical history rather than bloodwork alone. Several members described years-long diagnostic journeys marked by misdiagnosis as fibromyalgia, frustrating referrals to pain management, and eventual relief when a knowledgeable rheumatologist looked at the full picture and started treatment with medications like methotrexate, prednisone, and biologics. A recurring theme was fierce encouragement to trust your own body, advocate persistently for proper care, and not let a negative blood test derail a diagnosis when imaging and symptoms clearly point to AS.

A MySpondylitisTeam Member

Yes, it is possible to be HLA B27 negative and still have spondylitis. 85% of people with axial spondylitis are HLA B27 positive, but that still leaves 15% of people who aren't.

September 8, 2020
A MySpondylitisTeam Member

I am negative also. After being told I had fibromyalgia for years, even when my ANA was 100, my pain management sent me to the professor over rheumatology at USF. He right away diagnosed me with AS. He put me on prednisone for a month with methotrexate, plaquinol , and asacol. I had almost immediate relieve from the prednisone. He never bothered testing for HLA B27.
When I looked into another Rheumatolgist she first test me for it and because it was negative she said I had fibromyalgia and not AS.
I read somewhere that a researcher has found other genetic markers than HLA B27 but I haven’t seen or heard they test for any others.

October 22, 2022
A MySpondylitisTeam Member

I am negative also. My doc said it doesn’t matter that much. I have AS in my neck and si joints/ lower back. All my blood work was also normal. I was misdiagnosed with fibromyalgia and now I was diagnosed “officially” last month. Trust yourself and be your own advocate. From so many years being undiagnosed I now live in pain 24/7. Don’t let that happen to you and don’t let them brush you off.

December 30, 2022 (edited)
A MySpondylitisTeam Member

Being diagnosed negative HLA-B27 delayed proper diagnosis for me.

Doctors were not well informed about this "rare" disease, even though 1 in 300 (more or less) have it. Many radiologists need updating too. MRI without dye will likely not see AS, and the dye has become scarce and reserved for life-threatening conditions.

In my case, a lateral x-ray would have worked to recognize the traditional calcification connecting cervical joints and an SI joint (pelvis) x-ray with dye 10-20 years earlier.

Hope you have a good new year.

December 30, 2022
A MySpondylitisTeam Member

That’s true

September 8, 2020

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