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Joined: Jan 2010
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cemc Offline OP
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I'm in the UK where it seems "spondyloarthropathy" or "undiff spondy" diagnoses either aren't given or aren't enough to get access to AS treatments.

As far as I can see you either get an AS diagnosis if you show sufficient damage on xray. If you don't show anything on xray you might get an axial spondylitis diagnosis if you use a completely different diagnostic pathway and show active inflammation on MRI, are HLA B27 positive plus show "objective" evidence of inflammation in raised CRP or ESR (none of which are required in radiographic AS diagnostic criteria).

So what should happen if you show positive xray evidence (only just, but its there) and meet all the criteria for inflammatory back pain (clear enough to get a diagnosis of AS by a well respected rheumie), but your current rheumatologist is using the axial spondylitis diagnostic pathway (and HLA B27 is negative, CRP and ESR aren't considered raised because of my age, and the MRI didn't at the time show active inflammation) completely ignoring the xrays or the inflammatory back pain and spinal mobility criteria?

I guess what I am asking is, can you have AS,if you don't actually also meet the criteria for non-radiographic axial spondylitis? Non-R AxSp seems to now be considered a precursor to AS, so are people like me going to be even more likely to miss out on diagnosis and treatment if more focus is put on MRIs (over xrays), CRP/ESR and HLA B27+ status?

Just to complicate things, I'm not a young male - I'm a post menopausal female with a 40 year plus history of back pain and a family history of inflammatory arthritis and other autoimmune conditions, but hormonal protection seems to have minimised the objective signs of damage which has only begun to show in the SI in the last 6 to 8 years, so my xray evidence is probably currently about the same level as a young male in the early days of seeking help.

I'd love to understand this whole diagnosis thing more, and to know whether anyone is doing any research into particularly late presentations in women whose AS was totally manageable with the odd NSAID and exercise for many years and only flared big time around menopause.

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Very_Addicted_to_AS_Kickin
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The ASAS Handbook has the updated diagnostic criteria from the international research community. Check the research done by Monica Ostensen (sp??) on AS and women. Based on her research, I came to the conclusion that in women, it's possible that we don't have x-ray evidence because we need our SIs to be free for childbirth. Once the child-bearing years are coming to an end, that's when we will start with fusing. I was 38 when I was diagnosed, right around the time that my hormones would have begun fluctuating. By then, I'd had at least three major (several years) flares, two cases of longterm iritis and back pain for 23 years. No damage visible on x-ray when I was 28 and they first looked at me for some clinical reason for my backpain, even tho I'd had iritis for about 18 months by the time the x-rays were done.

I don't know if that helps.

Love and warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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Very_Addicted_to_AS_Kickin
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As we both know, i think you and i are a lot alike in our symptoms. Here, i couldn't get diagnosed for 12 years, but did have the freedom to fly to someone who would dx me without fusing, without blood markers, without a lot of radiological evidence.

but, wondering if you can get treated by getting a dx of something else.

do you have psoriasis? my aunt, who I believe has what i have, undiff spondy, got dx'ed with psoriatic arthritis instead, even though her joint stuff far out ways her skin stuff, but the skin stuff got her the dx. My dermatologist would have dx'ed me with psoriatic arthritis, if i had seen him before i finally got my dx. all those years of what i thought was dry skin and so never went to a dermatologist about, turns out it was psoriasis.

before my dx, my gastroenterologist tried to see if i had crohns. while not crohns, the inflammation and small crohns like ulcers in my ileum were helpful in my dx. if that hadn't worked, i'd have gone for a colonoscopy when in a flare, vs waiting until my GI tract was "back to normal".

if you can get a dx of psoriasis or IBD, that could get you the treatment you need.

Mostly it just makes me fume when doctors won't dx and treat patients based on symptoms, obvious symptoms, but instead insist on lab results that aren't always strong.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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cemc Offline OP
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Thanks both of you. Inanna - thanks especially for that reference. I've been trying to find good research on AS and women, because it does seem that there is a subgroup of us who get a major exacerbation at menopause with only minimal problems before then.

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AS Czar
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Hello, cemc:

Quote:

I guess what I am asking is, can you have AS,if you don't actually also meet the criteria for non-radiographic axial spondylitis?


Yes,
but I do not trust HLA B27 negative status unless obtained by either Fc or ELISA tests; the serological test produces too many false negatives.

Then, the best way to image inflammation might be nuclear bone scan actually looking in the characteristic areas.

If there is ANY SIJ damage, that is very characteristic of AS and only AS, except for certain farmers, and longshoremen from pre-1900.

Long-term unrelenting characteristic pains and ROM studies alone should be enough to provide enough evidence of AS, however, the worst thing that ever happened to me was FINALLY getting a diagnosis! I eventually succumbed to their offers of easy quick relief of NSAIDs.

Tnf-a drugs are much better for basic relief, I believe, and really the worst thing I did was get entangled by the medical abattoir; the best treatment for AS begins right in the kitchen (IMntbHO+Experience).

HEALTH,
John

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John,

I see you mention bone scans. But as I relayed in my recent inquiry everything I could find in medical literature on line said that only 50% of people with documented AS showed anything on a bone scan, and it is not recommended for diagnosis. I guess if it did show spots of inflammation it might be indicative.

CEMC,

I am confused by your doctor's position or maybe it's just different from what my daughter's rheumatologist would do. Although I probably shouldn't speak for him, I am pretty sure he would take clinical findings (he was very thorough) with XRay evidence as diagnostic. He definitely would not have ordered an MRI if the XRay were positive.

John may be right about the reliability of the HLA B27 test, but the rheumatologist we saw was not bothered by a negative result. In his view, they have found other genetic markers and he is pretty confident my daughter would be positive on one of those if they were commercially available. She did have elevated ESR and very high CRP. Her MRI showed bone marrow edema on both sides (required to be considered a positive result), as well as bilateral sclerosis.

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Very_Addicted_to_AS_Kickin
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That's the conclusion I came to, actually. In fact, I've pretty much come to the conclusion that AS is filled with sub-sets, all of which serve to delay diagnosis because the medical community is only looking for the 'classic'/textbook presentation.

Dr Ostensen's work was a revelation to me.

Love and Warm Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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Very_Addicted_to_AS_Kickin
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Hi,

You may be getting confused between a bone density scan and a nuclear bone scan. Bone density scans are next to useless in this case. A nuclear bone scan will show inflammation wherever it exists in the body. Mine lit up like the Times Square Christmas Tree when I had it because I was in full flare. It's part of what got me diagnosed.

I hope that helps.

Warm Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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