Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How many folks are not positive for gene?

Hey there Ottis,
Thank you for the warm weIcome. I was quite interested in your post. You stated that you drank a lot of milk, not pasteurized. I as a child I too drank a whole lotta milk (everytwo days we had to get another gallon of vitamin D~ could account for the chubbiness and desire for baked goods too!) My Dad has told me that during my Mom's pregnancy with me, she was instructed to take a load of vitimans (that doctor was later arrested for insurance fraud). I would think that the answer lies in the environment, but now I'm not so sure (see John the Dragon Slayer's post).

I am interested in a cure and I too know that it is too late for me, but we need to know what causes this so we can learn how to stop it! Take care and chat with ya later, JP

Hi there Peter! Welcome ! The gene HLA B27 is the gene that most folks with AS have. Some of us don't have it, but now I've been informed that sometimes we do have a B27 gene that has been overlooked (see John the Dragon Slayer's post). This is of much interest to me becasue I really wanted to know just how I developed this disease. Stuff like, am I gonna pass it on to my kids or is there something that I should never let the be exposed to are constantly going thru my brain. I guess it's worth getting the gene test if you are curious about how you got AS. To my knowledge, how you got AS does not impact the course of treatment. Hope to see ya around here chatting soon, take care, JP

Hi JP-

I grew up in suburbia, but went camping all the time as a kid/teen/young adult, all over the midwest and up in Ontario, Canada. In college I moved to Boston for 5 years, and then it was down to NYC for the last 15 or so....I had back pain stretching back to Boston, in my early to mid-twenties, but it really hit hard, although infrequently at first, in NYC in the late '80s, when I was 26-27.

I have HLA-B27, had iritis, confirmed AS about 4 years ago when I was 34ish....

Hope that helps, welcome to the site, as we know now, although HLA-B27 is found in 8% of the European population I believe, we have Asian ASkickers and I believe Indian and Middle Easterners, and yes, the Eskimos have the highest percentage of HLA-B27....and another myth is that it is a disease of men....as you see here, just as many KickASers are women. Hang in there!

Peace
Linc

Linc O'Brien

Gee, I must say I'm surprised by the number of people that haven't been tested for the HLA B27 gene and have seemingly been diagnosed with AS>

To diagnose AS as I understood, there are a number of factors the Rheumies look at such as inflammation levels (ESR or CRP), the pain in the SI joints and any associated fusing, family history of AS, the flexibility test of bending forward (I think called the Schrober test????), and of course the HLA B27 gene. Of course as pointed out around 5% of those with AS don't have the gene (or have as Dragonslayer says a false negative test). The point is that the rheumies should be taking the whole range of factors. Maybe in some cases they have and just haven't told you.

I find it beneficial to get copies of all blood tests performed and then read up on them say on the "net" to find out what they are. You find that with knowledge comes a bit of comfort of knowing what the hell is going on.

Don't think you can - KNOW YOU CAN

There was a posting some time ago by Evelyn giving the different criteria for a DX of AS, and from memory it was back pain lasting for more than 3 months, early morning stiffness that gets better with movement, involvement of at least one peripheral joint, heel pain, range of motion in the back, radiological changes on a scale from 0 for no changes (as in undifferentiated spondylarthropy, spondylitis, some think of it as the precurser to AS, lots of pain with no fusion, the type women seem to suffer from the longest, hence the difficulties in DX, testing positive for the gene, and several others. Last time I saw it I tested positive for six out of seven criteria, I think it was. I'll see if I can find it again.

Cheryl

Dogs believe in long term relationships

Giardia, which is an intestinal parasite that can be found in water sources, can cause reactive arthritis, a member of the spondyloarthropathy family, the family of overlapping conditions which includes ankylosing spondylitis.

My son likely contracted his reactive arthritis from contaminated water during traveling

Here's more about giardia and reactive arthritis:
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=16396&page=&view=&sb=&o=&vc=1#Post16396

Below is the repost of the "diagnostic criteria" post from some time back

The term spondyloarthropathy is an umbrella term for a family of conditions which includes ankylosing spondylitis, certain forms of psoriatic arthritis, enteropathic arthritis (arthritis associated with inflammatory bowel disease), reactive arthritis/Reiter’s syndrome (arthritis associated with a known or likely preceding infection of the genitourinary tract or the intestinal tract) and "undifferentiated’ spondyloarthropathy.

There are two sets of established criteria in the medical literature for the diagnosis of ankylosing spondylitis. These are the "Rome criteria" and the "New York criteria." For the definite diagnosis of ankylosing spondylitis according to established criteria, there needs to be evidence of sacroiliac/spine changes on xray exam. Changes to the xray exam may not occur until relatively late in the disease process, so early AS may not be found by these "AS" criteria.

There are also criteria for the diagnosis of spondyloarthropathy that do not necessarily require evidence for changes on xray. Again there are two sets of established criteria in the medical literature for the diagnosis of spondyloarthropathy. These are the "ESSG criteria" (European Spondyloarthropathy Study Group) and the "Amor criteria." So someone with early AS can be given a diagnosis of spondyloarthropathy which may then evolve into definite AS in later years. If a person with spondyloarthropathy has associated psoriasis, then they have psoriatic arthritis. If a person with spondyloarthropathy has associated inflammatory bowel disease such as Crohn’s disease or ulcerative colitis, then they have enteropathic arthritis. If a person with spondyloarthropathy has good evidence of known or likely preceding infection just prior to the onset of joint pain, then they have reactive arthritis/Reiter’s. If a person with spondyloarthropathy does not have features of psoriasis, inflammatory bowel disease, or evidence of preceding urinary tract or intestinal tract infection, then they would have undifferentiated spondyloarthropathy. ANY OF THESE SPONDYLOARTHROPATHIES CAN EVOLVE INTO AS, BUT DO NOT ALWAYS DO SO.


ROME CRITERIA FOR ANKYLOSING SPONDYLITIS:
Rome Criteria (1961): Diagnosis of AS when any clinical criteria present with bilateral sacroiliitis [by X-ray] grade 2 or higher
1. Low back pain and stiffness for >3 months which is not relieved by rest
2. Pain and stiffness in the thoracic region
3. Limited motion in the lumbar spine
4. Limited chest expansion
5. History of uveitis

Rome Criteria from http://www.emedicine.com/med/topic2700.htm#target5

NEW YORK CRITERIA FOR ANKYLOSING SPONDYLITIS:
New York Criteria (1984 ): Definite AS when the fourth or fifth criterion mentioned [Xray changes] presents with any clinical criteria:
[A. Clinical Criteria]
1. Low back pain with inflammatory characteristics
2. Limitation of lumbar spine motion in sagittal and frontal planes
3. Decreased chest expansion
[B. X-ray Criteria]
4. Bilateral sacroiliitis grade 2 or higher [by X-Ray]
5. Unilateral sacroiliitis grade 3 or higher [by X-Ray]

New York Criteria from http://www.emedicine.com/med/topic2700.htm#target5

MODIFIED NEW YORK CRITERIA FOR ANKYLOSING SPONDYLITIS
Bilateral sacroiliitis [on xray], grade 2-4, or unilateral sacroiliitis [on xray], grade 3-4 and any one of the following three clinical criteria:
1. Low back pain of at least three months duration improved by exercise and not relieved by rest.
2. Limitation of lumbar spine motion in sagittal and frontal planes.
3. Chest expansion decreased relative to normal values for age and sex.

Modified New York Criteria fromhttp://www.sma.org/medbytes/ar_6.htm

ADDITIONAL DESCRIPTION OF CRITERIA FOR DIAGNOSIS OF AS
The diagnostic criteria for ankylosing spondylitis.
1. Limitation of motion of the lumbar spine in all three planes: anterior flexion, lateral flexion, extension.
2. History of pain in the lumbar spine or at the dorso-lumbar junction.
3. Limited chest expansion to 2.5 cm or less, measured at the fourth intercostal line.
4. sacroiliitis on xray of the sacroiliac joints.

The sacroiliitis is graded on radiological criteria:
Grade 0: normal.
Grade 1: suspicious.
Grade 2: minimal abnormality, small areas of erosions or sclerosis, without alteration of joint width.
Grade 3: definite abnormality- moderate or advanced sacroiliitis with irregularity, one or more erosions, evidence of sclerosis. Partial ankylosis
Grade 4: total ankylosis.

Definite ankylosing spondylitis:
Grade 3-4 sacroiliitis with at least one clinical criterion. Or grade 3-4 unilateral or grade 2 bilateral sacroiliitis, with clinical criterion 1 or criterion 2 and 3.

Probable ankylosing spondylitis:
Grade 3-4 sacroiliitis without any clinical criteria.

This set of criteria for AS is from "Drdoc" website: http://www.arthritis.co.za/ankspond.html

ESSG(EUROPEAN SPONDYLOARTHROPATHY STUDY GROUP) CRITERIA FOR THE DIAGNOSIS OF SPONDYLOARTHROPATHY:

Inflammatory spinal pain OR synovitis, assymetric, predominant in lower limbs
AND one of the following:
1. positive family history
2. inflammatory bowel disease
3. urethritis, cervicitis or acute diarrhea within one month before arthritis
4. buttock pain alternating between right and left gluteal areas
5. enthesopathy
6. sacroiliitis

ESSG criteria from http://www.rnzcgp.org.nz/nzfp/ISSUES/June00/FOCUS_PETRIE.htm

AMOR CRITERIA FOR THE DIAGNOSIS OF SPONDYLOARTHROPATHY
A. PAST OR CURRENT CLINICAL MANIFESTATIONS:
1. Back pain at night and/or back stiffness in the morning=one point
2. asymmetric oligoarthritis=two points
3. gluteal pain without other details=one point OR
alternating gluteal pain=two points
4. sausage like digit or toe=two points
5. heel pain or other enthesopathy=two points
6. iritis=two points
7. non-gonococcal urethritis or cervicitis within 1 month before the onset of arthritis=one point
8. diarrhea within one month before onset of arthritis=one point
9. past or current psoriasis and/or balanitis and/or inflammatory bowel disease=two points
B. XRAY CHANGES
10. sacroiliitis (stage 2 or above if bilateral, more than stage 2 if unilateral):three points
C. PREDISPOSING GENETIC FACTORS
11. Presence of the HLA B27 antigen and/or positive family history for ankylosing spondylitis: two points
D. RESPONSIVENESS TO TREATMENT
12. Improvement within 48 hours after initiation of a non-steroidal anti-inflammatory drug: one point
Patients with a total score of six points or more are classified as having a spondyloarthropathy.

Amor Criteria from: http://www.rnzcgp.org.nz/nzfp/ISSUES/June00/FOCUS_PETRIE.htm

Johne's disease is a Crohns-like disease in cattle. It is caused by a mycobacterium paratuberculosis, a germ related to TB but not exactly the same as TB. There is some research which suggests that some cases of Crohn's disease in humans can be caused by the same mycobacterium. To my understanding, pasteurization is supposed to kill off this germ. If the unpasteurized milk you drank was from an infected cow, than you may have been exposed to this mycobacterium. Do you have Crohns in addition to AS? If the answer is yes to Crohns, then you should do a search looking for Bleutoo's posts. To my understanding, this mycobacterium would be treatable with a long course of antibiotics.

Welcome to KA, JP!!

I'm B27 negative, and have had AS (?) for at least 29 years - quite possibly longer - but only got my positive dx 4 years ago! (If I'd been B27 positive, I'd have got it at least 5 years before that - as it was, I got a Fibromyalgia dx instead!) I have a family history on my mother's side of IBD, and on my father's side of Psoraitic Arthritis, uveitis/iritis, and probable, but undxd AS. I've had Crohn's-type symptoms since my 'teens, and spinal problems triggered around age 19 by a car accident. I had spinal surgery in 1991 (L4/5 laminectomy/discetomy and partial fusion), and the orthopedic surgeon remarked at that time that I had a "70 -year-old spine in a 30-year-old body", but didn't test me for, or even mention, the possibility of anything other than "mechanical back problems", although he did warn me that the surgery wouldn't cure me, but should prevent me ending up in a wheelchair within 18 months, due to permanent sciatic nerve damage!

I grew up, and have always lived in towns, or suburbia, and have never really spent much time in the country. Any changes in drinking water (and diet?) have always brought on bouts of "gastritis" since I was a child though. 3 years ago I got my first (and so far, only - touch wood!) bout of iritis, and was started on methotrexate, as it wouldn't clear up with normal steroid treatment, and the docs were afraid I might lose the sight in my right eye. I've been on it ever since.

My daughter was dxd with IBD (probably UC, but the specialists still aren't 100% certain), and also has a lot of problems with her hips, knees, spine and neck.

Hope this helps. You've certainly raised some very interesting questions here, and sparked-off some new (and old!) theories and debates!

Best wishes,

Sue

Sadly, not so good. I'm sinking down past the 110 lb mark again and I'm going through more fatigue now then ever before. Just don't have the energy for normal day to day events. Thankfully my keyboard has a very soft touch or posting would be an effort..

My Doctor checked my weight a few weeks ago and I hadn't gained a pound even though I had been eating far more than my previous intake. He decided that I was at the stage of a wasting away cancer or HIV sufferer and started me on a new (to me) drug called Megestrol. It is sometimes called Megace. On the pill bottle, it also has the name megestrol acetate. Had to take 2 pills a day.

Was weighed again last friday and the Doctor doubled my dosage of Megestrol. The increased dosage has made me quite dizzy but that should pass in a few days. Since I started taking this, my urges to eat all the time have increased in a major way. My food input has just about doubled but that is difficult for someone like me who has had so much stomach removed.

Most of the warnings that came with the drug are definately not for me but it is nice to know that I will not become pregnant while taking these pills but I could possibly start getting larger and more tender breasts. Hmmm, bit of concern there of course.

Sure hope this stuff works or I will have to start buying new clothes in the boyswear section.

Take care,
George




Breb Assyl