Community Forums Women’s Message Board Non-axial Spondylitis with Enthesitis

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    • #566

      Hi All,
      I’m new to the forums. Hope you are all getting by alright in this time of COVID. Just wondering if other women out there have non-axial spondyloarthropy or spondylitis with enthesitis? My doc is willing to call my condition ankylosing spondylitis because of my blood tests (but I’m HLA B27 negative)and the way my troubles began, in my sacroiliac area. But for a very long time now my issues have been with my hips, Achilles’ tendons, shoulders, and ischial tuberosities (sitting bones—such comical words associated with these conditions!), bilaterally. So non-axial. And he says he believes my sitting pain of almost ten years is ethesitis. Anyone else out there with this combination of issues? I’m wondering if it’s a female-specific presentation. Also wondering if anyone has had successful treatment of enthesitis. I’ve had physical therapy and tried steroid injections, staying off my behind, exercises, etc. all to no avail.

      • This topic was modified 5 months, 2 weeks ago by Laura G.
    • #637

      Thought I’d reply since there aren’t any replies.
      I believe I have Axial Spondylitis, probably AKS. My history of 30+ years includes a long list of issues – plantar fasciitis, heel pain, knee pain & MCL issues, hip pain/clicking/bursitis, SI joint dysfunction, degenerative disc disease, thoracic rib pain, shoulder issues, wrist & hand pain (wear splints), TMJ, neck pain, and headaches.

      Whew !

      My former GP said my body just likes to be inflamed. My rheumie says I have “some sort of inflammatory arthritis”.

      I am currently on Plaquenil but in a lot of pain – waiting for an MRI for confirmation or just the next step. With all this COVID stuff I’m in limbo as I have low IgG (immunity) so without confirmation he is reluctant to prescribe more without confirmation. I am worried about permanent damage as I wait. I also moved to I’m down the list waiting.

      I’m HLA B27 negative as well. I did have a steroid shot in my hip about 20 years ago – didn’t really seem to help. I love prednisone because it makes me feel better but, as with the shots, they are not good for someone at risk for osteo.

      My best “remedy” is daily exercise and rest – walk/bike/swim – and lots of stretching. I’m worried about fusions so movement is gold.

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