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Hi guys, since April I've been having terrible thoracic back pain. It's the worst at night, and I usually have to get up at 4:00 AM and walk around for a while or use a heating pad on my back to help with the pain. If I'm lucky I can fall asleep again around 5:00 AM. For the past couple weeks, this pain has spread over my entire spine, and now I even have pain in my toes, ankles, knees, wrists, and fingers. Sometimes over my Achilles as well.

I've suffered from intermittent thoracic pain for quite some time; I got an MRI of the T-spine in 2007 which showed multilevel degenerative disc disease. Over the past decade, I'd have some periods of thoracic pain that would radiate around to my abdomen, but then it would go away.

Before April of this year, I'd never had problems with pain keeping me awake, although looking back, I believe I did meet the criteria for inflammatory back pain, especially since my back would often feel better after exercise.

I had some blood work done in June:

  • RF negative
  • anti-CCP negative
  • HLA-B27 negative

 

To me, it looks like RA is very unlikely. I'm wondering if it's enteropathic arthritis or HLA-B27 negative ankylosing spondylitis.

I'm currently waiting for an X-ray of my spine as well as a CT of the sacroiliac joints. I've sent in a request for a rheumatologist to evaluate me. I was on prednisone for a long time when I had UC, so I guess compression fractures of the vertebrae are also something that should be considered.

My j-pouch has been functioning well for a long time, and I'd hate to be diagnosed with something like AS. I know that 90%+ of Caucasians with AS are HLA-B27 positive, but that still means there are 5-10% who are negative!

Does anyone have any advice or thoughts to contribute? Would really appreciate your insight!

 

 

Last edited by John95
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According to my rheumatologist, those with enteropathic arthritis have a much higher rate of negative for HLA-B27. As a matter of fact, only 30-70% of those with IBD and AS are positive. So, it is quite a bit different than the general population. 

https://emedicine.medscape.com/article/334746-workup

I also am negative for all inflammatory arthritis markers, yet I was diagnosed with enteropathic arthritis based on history and clinical presentation.

Jan

Thanks, Jan. I've also come across that data. Is IBD-associated AS synonymous with enteropathic spondylarthritis? Does IBD-associated AS run a different course than primary idiopathic AS? It's hard to find a definitive answer on this.

Why were you diagnosed with enteropathic arthritis and not IBD-associated AS?

Last edited by John95

Yes, IBD related arthritis is enteropathic arthritis. It is not the same as AS, but is considered one of the related spondyloarthropathies. Enteropathic arthritis can be peripheral or axial or both. It tends to run a milder course than AS. Treatment is supposed to help slow progression. 

One of the main manifestations is enthesitis, inflammation where tendons and ligaments insert in the bone. The heel is a common area. What you have not mentioned was sacroiliac pain/stiffness, which is pretty much hallmark for AS and related diseases. 

One of my favorite resources: http://www.spondylitis.org/Types-of-Spondylitis

Jan

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