So my story is a bit unique in that my AS was actually Lyme and is now resolved with proper treatment. When my pain began it was very diffuse ( there can be peripheral not central AS) so I got ultrasound of hands, lots of X-rays, lots of blood tests all negative. As this mess proceeded over the course of years I finally developed horrendous shoulder, back, and si joint pain. First rheum dismissed all of this, second rheum was berhanu at arthritis and rheumatism. She took my pain seriously ( which was 8/10 waking me from sleep and causing massive hypertension and weight gain. (My pain was still being dismissed by many docs at that point). She ordered hlab27 (neg), full rheum panel, and also mri of si joints ( positive) and also cervical spine films showing the fusing was beginning. Again my case is different as the Lyme was later identified after I improved a lot on anti-inflammatory diet and sought out additional testing. I’d encourage anyone who is not being taken seriously to see a rheum or two ( or in my case 4 total). I’d also encourage anyone with this who doesn’t have a classic case to check their Lyme testing on igenex. It is a miserable disease if it’s just left unchecked. I hope you find help soon OP

Anonymous wrote:It's extremely rare. Only 3 million in the US. My husband and DS have it. So far DD hasn't shown signs. But it is a very serious diagnosis and be done only properly by a gene test. Dr. Laukaitis (now recently retired) in D.C. was the only proper practitioner to see. Good Rheumatologists would refer their clients to him. My son and DH are seeing a referral phsycian right now but are not happy. Check for specialists in major cities. Don't go to just any rheumatologist

A condition that affects 3 million people in the US is not rare. In the US a rare disease is defined as one that affects 200,000 or fewer people.
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However, I suspect that the number includes all the spondyloarthopathies, which as I have been saying are often referred to generally as ankylosing spondylitis. Take this article that cites the 3 million number: https://www.webmd.com/ankylosing-spondylitis/who-gets-ankylosing-spondylitis

It states: "People with ankylosing spondylitis may also have another inflammatory disorder, such as psoriasis, ulcerative colitis, or Crohn’s disease." This seems to be pretty clear evidence that in that 3 million number they are including not just AS but also other types of spondyloarthritis, specifically psoriatic arthritis and enteropathic spondyloarthritis.

Johns Hopkins maintains that in the US 1.5 million people have psoriatic arthritis, a more common form of spondyloarthritis, so 3 million for the ankylosing spondylitis subtype must be wrong. (https://www.hopkinsarthritis.org/arthritis-info/psoriatic-arthritis/)

Ending with a general note that a positive HLA B27 is NOT diagnostic for AS. About 7% of the population in the US is positive and the overwhelming majority do not have AS. There is simply an association of AS with a positive HLA B27, but it doesn't have to be positive to have AS, especially if you are AA.

Anonymous wrote:I assume the names are Dr. Laukaitis, best guy retired this year, and Dr. Bunker at Georgetown.

This is who my DH and son saw. He gave them two referral names. I think they are booked solid. Try Laukaitis' office and ask. If that doesn't work, check out NYC, Philadelphia and UVA medical centers

Anonymous wrote:you are all idiots. My Dh and DS have it. You have to have a gene test to determine. "A blood test to check for the HLA-B27 gene, which is present in most people with the disease. You may have the HLA-B27 gene and never develop ankylosing spondylitis, but it can give doctors more information when making a diagnosis"

This is a very serious diagnosis, BTW. Doctors don't want to give it. Mostt rhuematologists don't handle it. There are only two in D.C. who are experts in it. The best guy just retired this year.

Pp with AS for 15 years. I am hla b27 positive as is my uncle. I'm not an idiot. I used to see a doctor at the NIH who researched AS. He was the best but my appointments there took an entire day. He measured my chest expansion during my appointments, which few rheumatologists seem to do. Sorry to hear about your Dh and son. But try not to dismiss people.

It's extremely rare. Only 3 million in the US. My husband and DS have it. So far DD hasn't shown signs. But it is a very serious diagnosis and be done only properly by a gene test. Dr. Laukaitis (now recently retired) in D.C. was the only proper practitioner to see. Good Rheumatologists would refer their clients to him. My son and DH are seeing a referral phsycian right now but are not happy. Check for specialists in major cities. Don't go to just any rheumatologist

I assume the names are Dr. Laukaitis, best guy retired this year, and Dr. Bunker at Georgetown.

Anonymous wrote:you are all idiots. My Dh and DS have it. You have to have a gene test to determine. "A blood test to check for the HLA-B27 gene, which is present in most people with the disease. You may have the HLA-B27 gene and never develop ankylosing spondylitis, but it can give doctors more information when making a diagnosis"

This is a very serious diagnosis, BTW. Doctors don't want to give it. Mostt rhuematologists don't handle it. There are only two in D.C. who are experts in it. The best guy just retired this year.

Can you share their names?

you are all idiots. My Dh and DS have it. You have to have a gene test to determine. "A blood test to check for the HLA-B27 gene, which is present in most people with the disease. You may have the HLA-B27 gene and never develop ankylosing spondylitis, but it can give doctors more information when making a diagnosis"

This is a very serious diagnosis, BTW. Doctors don't want to give it. Mostt rhuematologists don't handle it. There are only two in D.C. who are experts in it. The best guy just retired this year.

Anonymous wrote:My daughter had X-rays to rule out

you or your DD are an idiot. It is a gene test

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If you have a normal x ray at your age and a normal HLA-B27 you don’t have it.

This is not accurate.

First, OP did not give her age. AS usually occurs before age 40 but some dismiss the pains as just getting older and so are not diagnosed until well after that.

Second, as explained above, it can take years for AS damage to show on X-Rays.

Third, if you are HLA-B27 negative, it is very likely that you don't have AS, typically the most severe form of spondyloarthritis, but you certainly can have another form of spondyloarthritis, which can be as painful as AS.

OP, have your GP run tests for ESR and CRP. One or the other or both is often, although not always, high in those with spondyloarthritis. These are not specific tests but can be a clue.

Right so as I said if you are HLA B27 and normal X-rays it’s not AS. ESR and CRP are extremely non-specific inflammatory markers and can be elevated in everything from infection to cancer.

I don't know why you are insisting that if you are HLA B27 negative and have a normal X-Ray you don't have AS.

AS is commonly used to refer to spondyloarthritis, of which there are several types, more generally. The only type for which the vast majority (but not 100%) are HLA B27 positive is the ankylosing spondylitis type. The damage often does not show up on X-Rays because it usually takes years for that happen, and this is as true for ankylosing spondylitis as it is for the other types of spondyloarthritis. Many with the latter are not HLA B27 positive.

Of course ESR and CRP are non-specific--as I said in my post--but taken together with other symptoms it can point to good reason to investigate further spondyloarthritis, or as many would refer to it, AS, as a cause.

Again, OP is specifically asking in her post about Ankylosing Spondylitis, not any other arthropathy. If she is HLAB27 negative with normal X-rays she does not have Ankylosing Spondylitis.

If she has questions about other diseases she can see a rheumatologist but for this specific question her GP is not wrong.

Again, this is just wrong.

For AS with normal X-Ray:

https://www.healthline.com/health/non-radiographic-ankylosing-spondylitis

"Ankylosing spondylitis can be present for years before X-rays show any damage. Magnetic resonance imaging (MRI) can sometimes identify signs of AS earlier than X-rays. It’s still possible to have AS with “clear” X-ray and MRI results."

For AS with negative HLA B27:

"While, in general, populations with higher levels of HLA-B27 have higher rates of AS, the connection between HLA-B27 and AS isn’t the same in all ethnic groups. For example, a 2017 study published in Clinical Rheumatology found that black Americans had more severe symptoms than white patients but only 63 percent were positive for HLA-B27 (compared with 85 percent of white patients and 87 percent of Latinos."

https://creakyjoints.org/about-arthritis/axial-spondyloarthritis/axspa-overview/hla-b27-ankylosing-spondylitis/

So, no, a normal X-Ray and a negative HLA B27 do not rule out AS. Which nonetheless is a common way of referring to spondyloarthritis more generally for which it is even more true.

But other than take meds to manage pain, what difference does it make if you’re diagnosed or not? I have autoimmune issues that I sort of forget about because I don’t much care about the label as much as I do about just feeling better. No cure anyway.

I always recommend Dan Bunker and Megan Lockwood at Georgetown for taking people seriously about suspected autoimmune arthritis. I cried when Dr Bunker finally diagnosed me with PsA, because I had been ignored and told it was in my head for years. It was 10 yrs from onset to diagnosis. My fingers had already lost enough bone that it was visible on X-rays.

I have had it for 15 years. On my third biologic (cosentyx). My uncle was diagnosed in his 20s and unfortunately is completely fused. But the genetic link helped me get diagnosed. Stay as active as you can. I see Dr. Garren at WHC but have seen other rheumatologists over the years. Happy to share more if you have questions.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:If you have a normal x ray at your age and a normal HLA-B27 you don’t have it.

This is not accurate.

First, OP did not give her age. AS usually occurs before age 40 but some dismiss the pains as just getting older and so are not diagnosed until well after that.

Second, as explained above, it can take years for AS damage to show on X-Rays.

Third, if you are HLA-B27 negative, it is very likely that you don't have AS, typically the most severe form of spondyloarthritis, but you certainly can have another form of spondyloarthritis, which can be as painful as AS.

OP, have your GP run tests for ESR and CRP. One or the other or both is often, although not always, high in those with spondyloarthritis. These are not specific tests but can be a clue.

Right so as I said if you are HLA B27 and normal X-rays it’s not AS. ESR and CRP are extremely non-specific inflammatory markers and can be elevated in everything from infection to cancer.

I don't know why you are insisting that if you are HLA B27 negative and have a normal X-Ray you don't have AS.

AS is commonly used to refer to spondyloarthritis, of which there are several types, more generally. The only type for which the vast majority (but not 100%) are HLA B27 positive is the ankylosing spondylitis type. The damage often does not show up on X-Rays because it usually takes years for that happen, and this is as true for ankylosing spondylitis as it is for the other types of spondyloarthritis. Many with the latter are not HLA B27 positive.

Of course ESR and CRP are non-specific--as I said in my post--but taken together with other symptoms it can point to good reason to investigate further spondyloarthritis, or as many would refer to it, AS, as a cause.

Again, OP is specifically asking in her post about Ankylosing Spondylitis, not any other arthropathy. If she is HLAB27 negative with normal X-rays she does not have Ankylosing Spondylitis.

If she has questions about other diseases she can see a rheumatologist but for this specific question her GP is not wrong.

Anonymous wrote:I changed GPs because mine would not take me seriously either and would not write a referral. Had the new doctor order a HLA-B27 test which was positive. He ran all the other markers and by then my CRP was elevated. Rheumatologist diagnosed it as axSpA, as Xrays were clear. She did not order an MRI, but wanted me on Humira or Remicade. I'm in the midst of getting a second opinion, with hopefully more imaging.

I second the recommendation for exercise. Mine is inflammatory pain which gets worse with rest. I've also had decreased pain by watching what I eat, esoecially starchy food.

If the X-Rays clearly show AS, an MRI should not be necessary unless for some reason insurance requires it.