Also PP there are multiple HLAs associated with AS but they only usually check for the b27. I don’t know why. As I was negative I asked to be tested for the others to help my children if they developed symptoms. Maybe only research places do this. Definitely a decent share of population has b27 and they don’t have AS but if you have b27 it does add another weight to the scale of AS being likely if you have a given clinical picture. |
Incorrect. read below: Ankylosing spondylitis is relatively rare, affecting about 1 in 1,000 people. It is believed that people with the gene called HLA-B27 are at the greatest increased risk for developing ankylosing spondylitis, not everyone with the gene develops the condition. Ankylosing spondylitis is more common in men. What is Ankylosing Spondylitis? - Pfizer |
Yes, but he just retired. He gave my DH and DS names of two competent (?) doctors in the D.C. area that can handle A.S. |
A rare disease is defined in law: "The Orphan Drug Act defines a rare disease as a disease or condition that affects less than 200,000 people in the United States." https://www.dcurbanmom.com/jforum/posts/quote/30/27411481.page |
Wrong link! Right one: https://www.fda.gov/patients/rare-diseases-fda |
Who are the doctors? |
OP here. My bloodwork for HLA-B27 is negative. After doing a deep dive into symptoms, I’m still convinced I have this or something similar. I can’t get into the rheumatologist for the first appt until the end of June. I’ve been suffering for a very long time and assuming it was something completely different. My PCP is going to run an inflammation panel after I have pushed and pushed. (CRP, ESR, ANA) If that comes back negative, does it rule anything out? |
Berhanu, is who my appointment is with at the end of June. Wow. So coincidental. Great to hear she is so good. |
A relative has this, and all i know is that it’s extremely painful for her. She is treated with biologics, which she says do help quite a bit but don’t always last till the next dose. She does have a number of other autoimmune issues though so she might be an outlier. |
I was diagnosed at age 28 after having recurrent severe iritis. Yes, that is a manifestation. I was tested and B27 positive.
I had terrible gnawing back pain that worked its way up my spine. This was before OTC NSAIDS. Later, Aleve was helpful. Now in my 70s, I have little pain and low inflammation scores on blood tests but a very inflexible spine and must be careful. I did not do the one exercise I was told to do....spend 15-30 minutes a day lying in the floor chin in hands. As a result, I fused bent forward a bit in that old lady stoop. Stupid me! I am sure there is better treatment now. Get a rheumatologist. Mine retired. |
Oh yes, I was also told by an ER doc to always tell hospital, ER, etc. personneI that I have it so they are careful bending my neck if they have to incubate or resuscitate me...not to break my neck. |
My husband has this and it was confirmed by a blood test. His eye doctor brought it up. He and his father both have a distinctive gait and back pain they manage with exercise, but for my husband it manifests in periodic eye inflammation.
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An insistence that HLA-B27 must be positive causes many women especially to not be diagnosed properly with spondyloarthritis. I have a child with a form of spondyloarthritis that is discussed in obscure medical journals but which is not yet officially recognized. The striking thing about this form is that it almost always HLA B27 negative. In the meantime, her official diagnosis is axial spondyloarthritis. ANA is typically negative for those with spondyloarthritis, but CRP or ESR or both typically is elevated. However, in some cases neither is. What is very helpful is an extended hands-on exam by a skilled practitioner. I still can't believe that of the many doctors I took my child to figure out what was going on, only the last one, who made the diagnosis, asked her to touch her toes. The tips of her fingers hit mid-thigh. |
Very interesting. What type of spondyloarthritis? Who does she see? |
Getting an autoimmune disorder diagnosed take a long time. |