I suspect that I have ankylosing spondylitis. My GP is dismissing me.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

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.
.
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.

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

[Anonymous]

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

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.
.
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.

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

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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.
.
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.

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

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

[Anonymous]

Anonymous wrote:

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

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.

Who are the doctors?

[Anonymous]

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?

[Anonymous]

Anonymous wrote: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

Berhanu, is who my appointment is with at the end of June. Wow. So coincidental. Great to hear she is so good.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:I was diagnosed in the 1980s 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.

[Anonymous]

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.

[Anonymous]

Anonymous wrote: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?

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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?

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?

[Anonymous]

Getting an autoimmune disorder diagnosed take a long time.