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HLA-B27 negative
#253462 06/07/13 07:06 PM
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It is my understanding that it is very unusual to be diagnosed with AS (or spondyloarthropathy) if HLA-B27 negative. I have read some articles stating that some physicians will not even consider the diagnosis of AS if the test is negative. I suppose I am fortunate to have been diagnosed, even though it took many years of pain, and of course there was the fear of not knowing what was wrong with me.

I am curious to know how many other users of the message board are HLA-B27 negative. If you are, I would love to learn more about your story, if you feel comfortable enough to share.

Thanks smile


Re: HLA-B27 negative
NorthCentralFL #253463 06/07/13 07:08 PM
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My understanding is that you do NOT have to have the gene to be DXed.
someone will post the numbers,


Carrie
Small business owner, 50 / mother of 5, Fort Worth, Texas
Remicade, Seroquel, Folic Acid, MTX, gabapentin
Undifferented spondylopathy HLA-B27+ (onset 2007- DXed 2008) with associated uveitis, psoriasis
EPI and IBS - gastritis due to NSAIDs
Right Hip replacement 2017 with subsequent 4" heterotopic ossification (removed 2019)
Re: HLA-B27 negative
NorthCentralFL #253464 06/07/13 07:38 PM
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From the SAA page:

"First, hla-b27 is a perfectly normal gene found in 8% of the Caucasian population. Generally speaking, no more than 2% of people born with this gene will eventually get spondylitis.

Secondly, it is important to note that the hla-b27 test is not a diagnostic test for AS. (emphasis added) Also, the association between AS and hla-b27 varies in different ethnic and racial groups. It can be a very strong indicator in that over 95% of people in the Caucasion population who have AS test hla-b27 positive. However, only 50% of African American patients with AS possess hla-b27 , and it is close to 80% among AS patients from Mediterranean countries."

http://www.spondylitis.org/about/as_diag.aspx?PgSrch=hla-b27



The presence of HLA-B27 can help strengthen the case for an AS diagnosis, but the absence of it should not be a mark against the diagnosis.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: HLA-B27 negative
NorthCentralFL #253465 06/07/13 07:51 PM
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Funny thing happened on the way to making HLA-B27 a "requirement" they started doing more studies and found some huge varients among different populations. They discovered that about 90% of primary Caucasians with AS were positive but by the time they got to the Moroccans fewer than 40% of them were positive. It got into all this linear relationship stuff.

I know a number of folks who have an AS Dx and have never had a HLA-B27 test. you get points for a positive, but you don't get deductions if you don't. FWIW there are other things MUCH more critical. Quoting from the text below: "genome scanning has shown that the major histocompatibility complex (MHC),
including HLA-B27, contributes less than 40% to the recurrence risk ratio in AS"

I'd be awfully suspicious of any Doc who thinks HLA-B27 is a requirement. Incidentally the AS Dx is likley to go away anyway really making the water muddy.


(heres a pretty good text: http://www.vumc.nl/afdelingen-themas/41463/27797/2089686/2090082/1608664/5.pdf)

Re: HLA-B27 negative
NorthCentralFL #253466 06/07/13 08:47 PM
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I'm negative for HLA-B27. (I don't know my status for the other genes.) Thankfully, my rheumy was not phased at all by that result.


Amy

27 years old
AS diagnosis 2013; neck pain for seven or eight years, and spreading multiple-joint pain for about two years
Also: Fibromyalgia, Hashimoto's, hypoglycemia, Raynaud's phenomenon
Meds: Remicade, Norco (10-325 mg), Gabapentin, allergy shots, Prozac, Synthroid (25-50 mcg)
Re: HLA-B27 negative
tntlamb #253467 06/07/13 09:45 PM
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Originally Posted By: tntlamb
Incidentally the AS Dx is likley to go away anyway really making the water muddy.


Not sure I follow. Can you elaborate?


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: HLA-B27 negative
SouthernMoss #253470 06/07/13 10:12 PM
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Originally Posted By: SouthernMoss
Originally Posted By: tntlamb
Incidentally the AS Dx is likley to go away anyway really making the water muddy.


Not sure I follow. Can you elaborate?


To quote Chris Miller: "All of us are trying to educate everyone we can on the latest info as well as support them, but it is a constant, fluid situation in terms of what is currently "accepted". Heck, Axial Spondyloarthritis may replace many classifications soon. That will throw everyone a new curve ball in terms of USpA, JSpA and more."

If you think about it how can it be ANKYLOSING anything without fusion and How can it be SPONDYLITIS if it involves anything but the spine?

Around the world its changing/Spondyloarthritis is a family of arthritis, of which ankylosing spondylitis is the most common member. The other members are:

-Undifferentiated spondyloarthritis
-Non-radiographic axial spondyloarthritis
-Reactive arthritis
-Arthritis associated with psoriasis (psoriatic arthritis)
-Arthritis associated with inflammatory bowel diseases (ulcerative colitis or Crohn’s disease)

In Europe Spondyloarthritis has also been classified into “axial” and “peripheral” spondyloarthritis according to whether the involvement is mainly in the spine or in the extremities and its becomingt that way more frequently in the literature.

Ankylosing spondylitis belongs to the axial class of spondyloarthritis. Many patients are diagnosed as having an axial form of undifferentiated spondyloarthritis and may subsequently develop ankylosing spondylitis. Certainly more descriptive.

Last edited by tntlamb; 06/07/13 10:13 PM.
Re: HLA-B27 negative
NorthCentralFL #253472 06/07/13 10:47 PM
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I am also negative. Sadly I think there are still far too many doctors who give it a lot of weight judging by my own experiences and others on this forum. In addition to the HLAB27 there also still seems to be an issue with women not getting a DX because some docs still see it as a men's illness. The first rhuemy I saw about 3 years ago seemed to think both were very important. She basically told me that I couldn't have AS because I was a 38 year old woman and HLAB27 negative( even though I have a history of lower back and SIJ issues going back to my teens) and I couldn't have PsA because I wasn't having problems with my hands or feet (even though I have psoriasis). About six months later I started losing ROM in my neck and all of the reasons that I had gone to her to begin with just kept getting worse. I was a real mess by the time I got to my current rhuemy in January 2012. She is trying her best to stop any further damage and help me get my life back, God bless her. I actually cried with relief at my first appointment with her, finally someone cared and acknowledged that it wasn't all in my head. I also find it funny that she gave me a dual DX of the exact things I was told I couldn't have. She doesn't really think I actually have both but I meet the criteria for both and it keeps my treatment options open.


Kat, 42, mother of two great kids and wife to a great husband who manages to help me with my battles and still fight his own. AS/PsA (weird, I know) diagnosed Jan 2012, IBS, psoriasis. Suffered with back issues since my teens. Failed Enbrel due to bad reaction, started Humira 06/01/12, only helped briefly.Started Remicade 01/28/13 had severe reaction to the 4th infusion.currently off of biologics.
"Sometimes God calms the storm,Sometimes He lets the storm rage and calms His child."
Re: HLA-B27 negative
NorthCentralFL #253477 06/08/13 03:16 AM
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I am B27 negative and my SI joints are bilaterally fused. That second part made the diagnosis easier, though the first part made my rheumy ask me if I was super duper sure I had no rash anywhere (thinking PsA, I suppose).


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: HLA-B27 negative
NorthCentralFL #253479 06/08/13 03:27 AM
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Hello, NorthCentralFL:

Over 50% of AS+B27- presenting to the AS Middlesex Clinic, actually retested B27+; the serological test is highly flawed and many people who 'think' they are negative would become positive with proper (Fc or ELISA) testing.

However, a physician using the antigen as a criterion for diagnosis is not conforming with current standards (which fact does not help those of us who have been stuck with and by time and money-wasting doctors).

Agarwal (Pittsburgh) proposed guidelines for a diagnosis of "Pre-AS;" before radiological changes appear and this includes antigen status, plus several other aspects common in AS.

When I got AS, the connection was not yet known, but it was a great help in diagnosis: Not that anybody then could tell me what to do to avoid permanent damage. In fact, the ultimate diagnosis may have done more bad than good!

HEALTH,
John




Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
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