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the test results and info

The diagnosis is "spondyloarthropathy." It is a type of arthritis/autoimmune disease which is related to ankylosing spondylitis and inflammatory bowel disease.

This article by a rheumatologist discusses the characteristics, problems with misinformation and reasons for misdiagnosis of women with these condition. It won't surprise you that one reason is that women were viewed as "anxious and depressed." Wouldn't you be anxious and depressed if you were hurting all the time and no one did anything about it?

I did not have a test for the HLA-B27 gene associated with ankylosing spondylitis. It is possible that it might not be covered by insurance. On the other hand,

Although diagnostic criteria for the spondyloarthropathies have been developed for research purposes, the criteria rarely are used in clinical practice. Diagnosis is based primarily on the history and physical examination. There are no specific diagnostic tests for spondyloarthropathies. Supporting laboratory findings include absence of rheumatoid factor, elevation of the erythrocyte sedimentation rate (ESR) or C-reactive protein (CRP) level, and presence of anemia of chronic disease. HLA-B27 testing is of limited value. The synovial fluid typically is inflammatory (more than 2,000 white blood cells per mL, with a predominance of neutrophils), but this finding is nonspecific. Evidence of sacroiliitis or spondylitis may be seen on radiographs of the pelvis and lumbar spine.

Human leukocyte antigen B27 is strongly associated with spondyloarthropathy but is not a diagnostic test.

Serologic tests for rheumatoid factor and antinuclear antibody are usually negative in patients with a spondyloarthropathy. The erythrocyte sedimentation rate and the C-reactive protein concentration are often elevated, but elevations do not always correlate with disease activity.

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Patients with USpA generally have a good prognosis, but over time, some may develop AS or related disease depending on the individual. Some experts believe that those who test positive for the HLA-B27 genetic marker are more likely to develop full-blown AS after initially being diagnosed with undifferentiated spondyloarthropathy.

A minority of people with USpA will have mild and intermittent symptoms requiring only symptomatic therapy, but many will have chronic, yet not severe, symptoms requiring regular treatment and medication.

Another site mentions that people with spondyloarthropathy tend to respond well to treatment with NSAIDs and steroids. I took NSAIDs for many years due to "arthralgia"--another site mentions that children with spondyloarthropathy are often diagnosed with this, and I was 20 at the time I was diagnosed with it in my hands. I can't take NSAIDs anymore due to a reaction that indicates I am aspirin-sensitive. However, I went from being unable to lift a full milk jug without medication to being able to lift a 40-pound suitcase on 10 mg Prednisone.

Some posts on the AS board indicate that spondyloarthropathy is often an initial diagnosis made until the diagnosis can be clarified. I need to ask questions about what kinds of symptoms I need to monitor. I am reasonably observant if I know that something is important; but I have been through so many unproductive doctor trips (e.g. "your severe respiratory symptoms are just a virus, your eye pain is just allergies/sinus trouble, your seizures are stress-related) that I sometimes assume that I'm "just not feeling well" and it will pass. The unfortunate consequence of this practice is that I learn to tune out my symptoms as unimportant once I have observed them and determined that the doctor wouldn't think them worth mentioning.

I start Sulfasalazine in the morning: three days on 500 mg, seven on 500 mg twice a day, seven days on 1500 mg/day, and then up to 2000 mg/day. I have to get blood tests done to make sure I'm doing ok on it. My only disappointment at this time is that I'm having to drag medical lingo out of my doctor's office. I don't think they know me well enough to know that I like to know the specifics. I'm not sure if it's the "little girl phenomenon" or just the way they deal with all of their patients. I don't want, "We need you to have some bloodwork done." I wnt, "We need you to have a CBC done because blah blah blah."

Comments

( 5 comments — Leave a comment )
kl1964
Jul. 9th, 2007 10:29 pm (UTC)
Well, at least that's something. You've got something tangible to point to, and I think that's important. I hope you can turn into a positive for you.
3kitties
Jul. 9th, 2007 10:48 pm (UTC)
positive
I actually am feeling very hopeful. I start the Sulfasalazine tomorrow--I should edit the post. I think this may turn out to do a lot of good for me, and perhaps my quality of life will improve a lot.
nabba
Jul. 9th, 2007 11:26 pm (UTC)
Nothing's ever a break huh
I understand how you feel though
puppybraille
Jul. 9th, 2007 11:26 pm (UTC)
I know very little about the meds you described. I'm praying for you, but glad you got a diagnosis.
yummykit
Jul. 15th, 2007 05:43 am (UTC)
congrats on the diagnosis. i know how frustrating it can be to go without one for so long. i have to catch up on the rest of your posts, so i hope things are going smoothly so far.
( 5 comments — Leave a comment )

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Sarah Blake LaRose
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