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

[Anonymous]

Anonymous wrote:

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?

She has spondyloarthritis associated with FMF, a genetic auto-inflammatory disease. Most research comes from Turkey, the only country with advanced research facilities that has a sizeable enough population of people with the disease for large studies.

She was seeing Dr. Laukaitis, already much mentioned here. We are in the process of finding another rheumatologist since he retired. I referred two (male) work colleagues to him whose doctors had bungled their spondyloarthritis diagnoses because they were HLA B-27 negative. One eventually had to leave on disability because he had gone untreated for too long.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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?

She has spondyloarthritis associated with FMF, a genetic auto-inflammatory disease. Most research comes from Turkey, the only country with advanced research facilities that has a sizeable enough population of people with the disease for large studies.

She was seeing Dr. Laukaitis, already much mentioned here. We are in the process of finding another rheumatologist since he retired. I referred two (male) work colleagues to him whose doctors had bungled their spondyloarthritis diagnoses because they were HLA B-27 negative. One eventually had to leave on disability because he had gone untreated for too long.

Thanks for the info. I’m sorry to hear about your daughter. Finding answers is a real chore. I’ve been going down completely wrong rabbit holes for years. My PCP has not only been unhelpful, but had really convinced me I didn’t need to see a rheumatologist for years. Hopefully I will get answers.

[Anonymous]

OP, it's already been mentioned here, but Aleve has been incredibly helpful with my pain, even better than Rx NSAIDs. It's not ideal, given the GI impact, but might be good to try to tamp down the inflammation. When my pain flares, I take a double dose morning and evening for several days and it really works. Does your pain respond to any meds?

As for a diagnosis, increased inflammatory markers, CRP and ESR, will play into a diagnosis, as will symptoms. If you are hobbling around in pain for more than 30-60 minutes everyone morning that is a sign. As is pain at the SI, hips or lower back that gets worse with rest, hence the morning pain and stiffness. A peripheral form of the disease also impacts outlying joints. I myself have the axial form but my Achilles were hugely damaged due to years of stiff leg muscles.

Do not discount diet also. Autoimmune diseases begin in the gut. Might be helpful to do an elimination diet and keep a food diary. I was so frustrated, I did a three day fast and all my pain went away. I slowly added food back in to find the worst triggers. It's not full proof, but I've been able to avoid the immunosuppressants so far. And it's something you can test while you wait for appointments. Sauna and controlling stress really helps too.

[Anonymous]

Anonymous wrote: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.

THIS is consistent with AS. A lot of what other people are describing is not.

[Anonymous]

Anonymous wrote:

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 for someone who is BOTH HLA-B27 negative AND has normal rays please show me articles from peer reviewed, reputable journals where people have the disease. The sources you cited are…not.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

THIS is consistent with AS. A lot of what other people are describing is not.

I posted above, with symptom descriptions for peripheral or axial spondyloarthritis, a precursor to AS. There is a lot of interest in catching the disease before anything irreversibly fuses, hence these newer diagnoses.

I was living out of state when my rheumatologist, who herself has AS, diagnosed me with axSpA. The average time until diagnosis for women with AS
is something like seven years. For axSpA it is 2-6 years from symptom onset. Why discourage the OP from consulting a specialist?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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 for someone who is BOTH HLA-B27 negative AND has normal rays please show me articles from peer reviewed, reputable journals where people have the disease. The sources you cited are…not.

Different poster, but here's a good overview of how these are all related.

https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr2.11555#:~:text=Patients%20with%20axSpA%20who%20are,need%20for%20early%20and%20accurate

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

THIS is consistent with AS. A lot of what other people are describing is not.

I posted above, with symptom descriptions for peripheral or axial spondyloarthritis, a precursor to AS. There is a lot of interest in catching the disease before anything irreversibly fuses, hence these newer diagnoses.

I was living out of state when my rheumatologist, who herself has AS, diagnosed me with axSpA. The average time until diagnosis for women with AS
is something like seven years. For axSpA it is 2-6 years from symptom onset. Why discourage the OP from consulting a specialist?

+1

Spondyloarthritis in all forms can be very painful. There is one poster who seems very hung up on the ankylosing spondylitis form, I suppose because that is what OP put in her header. But the AS term is often used to refer to spondyloarthritis more generally. And you can definitely have it with negative HLA-B27 and negative X-Rays. Where those are negative but the person has symptoms, they definitely should not be discouraged from pursuing help, including by their GPS who, indeed are often dismissive, especially to women.

[Anonymous]

OP here. Thanks all. I’m guessing that I have something in this family/arena. I’m concerned that it’s taken me so long to stop assuming it’s orthopedic and get the proper care.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

THIS is consistent with AS. A lot of what other people are describing is not.

I posted above, with symptom descriptions for peripheral or axial spondyloarthritis, a precursor to AS. There is a lot of interest in catching the disease before anything irreversibly fuses, hence these newer diagnoses.

I was living out of state when my rheumatologist, who herself has AS, diagnosed me with axSpA. The average time until diagnosis for women with AS
is something like seven years. For axSpA it is 2-6 years from symptom onset. Why discourage the OP from consulting a specialist?

+1

Spondyloarthritis in all forms can be very painful. There is one poster who seems very hung up on the ankylosing spondylitis form, I suppose because that is what OP put in her header. But the AS term is often used to refer to spondyloarthritis more generally. And you can definitely have it with negative HLA-B27 and negative X-Rays. Where those are negative but the person has symptoms, they definitely should not be discouraged from pursuing help, including by their GPS who, indeed are often dismissive, especially to women.

I am that poster and didn’t discourage her from seeing a rheumatologist. I discouraged her from repeatedly insisting to her GP that has a specific uncommon disease (Ankylosing spondylitis) that she almost certainly does not have, and for which she has tested negative. She could see rheumatology to ask whether she might have a different one of the seronegative spondyloarthropathies.

OP, try over the counter NSAiDS while you’re waiting (ibuprofen).

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

THIS is consistent with AS. A lot of what other people are describing is not.

I posted above, with symptom descriptions for peripheral or axial spondyloarthritis, a precursor to AS. There is a lot of interest in catching the disease before anything irreversibly fuses, hence these newer diagnoses.

I was living out of state when my rheumatologist, who herself has AS, diagnosed me with axSpA. The average time until diagnosis for women with AS
is something like seven years. For axSpA it is 2-6 years from symptom onset. Why discourage the OP from consulting a specialist?

+1

Spondyloarthritis in all forms can be very painful. There is one poster who seems very hung up on the ankylosing spondylitis form, I suppose because that is what OP put in her header. But the AS term is often used to refer to spondyloarthritis more generally. And you can definitely have it with negative HLA-B27 and negative X-Rays. Where those are negative but the person has symptoms, they definitely should not be discouraged from pursuing help, including by their GPS who, indeed are often dismissive, especially to women.

I am that poster and didn’t discourage her from seeing a rheumatologist. I discouraged her from repeatedly insisting to her GP that has a specific uncommon disease (Ankylosing spondylitis) that she almost certainly does not have, and for which she has tested negative. She could see rheumatology to ask whether she might have a different one of the seronegative spondyloarthropathies.

OP, try over the counter NSAiDS while you’re waiting (ibuprofen).

She hasn’t “tested negative”. The HLA-B27 is not necessary to get a diagnosis of Ankylosing Spondylitis. Now if her xrays or MRI are negative I may agree, but not yet.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

THIS is consistent with AS. A lot of what other people are describing is not.

I posted above, with symptom descriptions for peripheral or axial spondyloarthritis, a precursor to AS. There is a lot of interest in catching the disease before anything irreversibly fuses, hence these newer diagnoses.

I was living out of state when my rheumatologist, who herself has AS, diagnosed me with axSpA. The average time until diagnosis for women with AS
is something like seven years. For axSpA it is 2-6 years from symptom onset. Why discourage the OP from consulting a specialist?

+1

Spondyloarthritis in all forms can be very painful. There is one poster who seems very hung up on the ankylosing spondylitis form, I suppose because that is what OP put in her header. But the AS term is often used to refer to spondyloarthritis more generally. And you can definitely have it with negative HLA-B27 and negative X-Rays. Where those are negative but the person has symptoms, they definitely should not be discouraged from pursuing help, including by their GPS who, indeed are often dismissive, especially to women.

I am that poster and didn’t discourage her from seeing a rheumatologist. I discouraged her from repeatedly insisting to her GP that has a specific uncommon disease (Ankylosing spondylitis) that she almost certainly does not have, and for which she has tested negative. She could see rheumatology to ask whether she might have a different one of the seronegative spondyloarthropathies.

OP, try over the counter NSAiDS while you’re waiting (ibuprofen).

She hasn’t “tested negative”. The HLA-B27 is not necessary to get a diagnosis of Ankylosing Spondylitis. Now if her xrays or MRI are negative I may agree, but not yet.

Correct. But you added "or MRI," which I would agree with. It can take many years for damage to show up on an X-Ray, but it can show up quite quickly on an MRI, provided the right type is done.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: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.

THIS is consistent with AS. A lot of what other people are describing is not.

I posted above, with symptom descriptions for peripheral or axial spondyloarthritis, a precursor to AS. There is a lot of interest in catching the disease before anything irreversibly fuses, hence these newer diagnoses.

I was living out of state when my rheumatologist, who herself has AS, diagnosed me with axSpA. The average time until diagnosis for women with AS
is something like seven years. For axSpA it is 2-6 years from symptom onset. Why discourage the OP from consulting a specialist?

+1

Spondyloarthritis in all forms can be very painful. There is one poster who seems very hung up on the ankylosing spondylitis form, I suppose because that is what OP put in her header. But the AS term is often used to refer to spondyloarthritis more generally. And you can definitely have it with negative HLA-B27 and negative X-Rays. Where those are negative but the person has symptoms, they definitely should not be discouraged from pursuing help, including by their GPS who, indeed are often dismissive, especially to women.

I am that poster and didn’t discourage her from seeing a rheumatologist. I discouraged her from repeatedly insisting to her GP that has a specific uncommon disease (Ankylosing spondylitis) that she almost certainly does not have, and for which she has tested negative. She could see rheumatology to ask whether she might have a different one of the seronegative spondyloarthropathies.

OP, try over the counter NSAiDS while you’re waiting (ibuprofen).

I find it a bit odd that you are insisting on being so precise about AS when it is a subtype type of spondyloarthritis, which PP certainly may have.

Ankylosing spondylistis was the first known spondyloarthopathy, initially called Marie Strumpell disease, and as additional types of spondyloarthopathy were found it has been pretty common to refer to them all as AS as one can see done in the more popular medical sites like Healthline with the various subtypes described.

Spondyloarthritis is not common, but it is far from rare. As a subtype, AS is of course less common but it is difficult to tell how rare it is since the statistics tend to group all the spondyloarthopathies together.

In any case, I wouldn't recommend that OP go to a rheumatologist saying she thinks she has AS or spondyloarthritis. Instead she should stick to describing her symptoms.