PMR and Undifferentiated Spondyloarthropathies

I tested HLA-B27 positive almost 40 years ago. I was closer to 30 years of age with an acute onset of severe lower back pain following an enteric infection. I also developed uveitis (eye inflammation). Being HLA-B27 positive made it highly likely that I had a spondyloarthropahy. However, being HLA-B27 positive didn't "confirm" anything all by itself. You also need certain symptoms and some "defining characteristics."

There is actually a "Family of Spondyloarthropathies" with overlapping features. The specific type of spondyloarthritis you get diagnosed with is based on which feature predominates. I was diagnosed with Reactive Arthritis which derives its name from a reaction to an infection. Being "undifferentiated" means no specific characteristic predominates.

I don't know where to begin to share information about this family of autoimmune disorders. The following was the website I started with many years ago.

Achilles tendonitis doesn't distinguish one type of spondyloarthritis from another type because all types make you prone to have Achilles tendonitis.

PMR isn't the same as spondyloarthritis but you can have PMR in addition to spondyloarthritis. I had to wait until I was 52 years old to get the diagnosis of PMR tacked on.

If you ask me, there is little difference between PMR pain and pain caused by spondyloarthritis. The two kinds of pain tend to blend together and everything hurts. PMR can be a piece of a much larger puzzle. My rheumatolgists says I have a "full range of rheumatology problems."

I just think I'm one big inflammatory mess. I now do a monthly infusion of Actemra and haven't needed any prednisone in nearly 3 years. Kevzara would probably work well for me too. Both biologics will target the PMR piece of the puzzle. I'm just happy Actemra works reasonably well for me and the rest of the puzzle is coming along.

@dadcue: your comments and links have been of great interest to me. When I was diagnosed with PMR in January 2024, my primary care provider added a diagnosis of ankylosing spondylitis. I was so focused on the PMR, I didn’t pay much attention at the time. I’m sure she feels I have it because of my history of Crohn’s disease and more recent lumbar spine issues. When diagnosed with Crohn’s thirteen years ago, I had an eye inflammation and a swollen knee, both considered “extra-intestinal” symptoms. All this is certainly indicative of ankylosing spondylitis, but I’m not sure how it affects treatment decisions. Each condition is treated by different specialists who focus on “their” area of expertise. I have not been tested for the HLA-B27 gene and don’t seem to have any pelvic issues, yet.

This family of spondyloarthropathies opens the door to connect what seems to be unrelated conditions. I have had hand issues with a debatable diagnosis. Is it pmr? OA? CPPD or combo? At the suggestion of my foot Dr I'm seeing the ortho Dr who's the hand specialist for an issue with my palm that appears to be possible Dupuytren's contracture/disease or Tensosynovitis. I've had episodes of eye inflammation but not uveitis. With every new problem you have to wonder if it's related to existing problems, always trying to connect the dots.

Polymyalgia rheumatica is a rheumatic autoimmune inflammatory disease that affects the lining of the joints (synovitis) or around the joints (periarthritis). PMR doesn't usually cause joint destruction.

The place where a tendon or ligament meets bone is called an enthesis. Enthesopathy is an umbrella term for conditions that affect these connection points. This is where you will see inflammation in the spondyloarthritis family of diseases. Spondyloarthritis eventually causes joint damage. The defining characteristic of the spondyloarthritis family of diseases is enthesitis.

The synovium of a joint and enthesis are in the same vicinity. This is how PMR and spondyloarthitis are related but still different.

Spondyloarthritis symptoms usually manifest at a younger age compared with PMR. I had lower back pain for no apparent reason when reactive arthritis was first diagnosed. I guess I was lucky to have uveitis too otherwise nobody would have believed me. I couldn't believe it myself. The pain was like torture almost immediately after falling asleep. I called my bedroom a torture chamber. Absolutely no pain when I was awake and moving around. I was diagnosed by a primary care doctor and treated with sulfasalizine. An ophthalmologist treated uveitis with one large dose of prednisone and my uveitis resolved and my pain disappeared.

I had recurrent flares of uveitis for the next 20 years. I lost count after more than 30 flares of uveitis. My ophthalmologist and I became good friends because we saw each other frequently. We perfected our routine for putting uveitis back into remission. I didn't tell him about the back pain because it would go away when I took massive doses of prednisone for the uveitis.

I had a huge stockpile of leftover prednisone from the recurrent flares of uveitis. You would be amazed at how many painful conditions prednisone can treat. The worst thing of all was a thing called trigeminal neuralgia. I quit seeing a neurologist and I treated my trigeminal neuralgia myself for 30 years with prednisone. Who needs all those other specialists when you have prednisone available and can self medicate?

PMR happened when I got a bright idea that I would stop taking prednisone because of too many side effects. I decided to throw my entire stockpile of prednisone away. When the generalized body pain occurred, I received the attention of many specialists. The generalized body bain was characteristic of PMR but I'm convinced it was also adrenal insufficiency. My body could no longer regulate inflammation without prednisone. I was dependent on prednisone for 13 years after PMR was diagnosed.

Next Fri I am starting PT for the Achilles tendonitis with the same therapist I have had a few times for problems related to pmr but maybe spondyloarthropathy. This is the second bout with this Achilles problem since my pmr diagnosis. What helped the most the first time was wearing backless shoes/sandels to avoid rubbing on the back of my heel because I developed Haglunds deformity - a protruding lump. Not sure how it got aggravated again but 6 weeks ago I could hardly walk. Better now but still hurting. I feel confident this therapist will help me. My hands are a bit bothersome but bearable. He may have suggestions for me.
I know the HLA-B27 test is not definitive but I guess a positive result could link my pmr with a spondyloarthropathy????

Hi- I have seronegative spondyloarthropathy, meaning I’m not HLA-B27 positive and my inflammatory markers aren’t elevated. Mine is peripheral, not spinal (so far), so it’s not AS.

I’m surprised your primary or rheumatologist didn’t discuss treatment for AS, because untreated, it could lead to other problems (spinal fusion, eye inflammation, breathing issues if your ribcage stiffens) but I could see how PMR would be a priority and maybe even the prednisone would mask or improve the AS symptoms.

As you may have found though, the treatment for spondyloarthropathy is different… It’s usually managed by a biologic, unless you can get enough relief from NSAIDs, but that usually requires higher doses, which aren’t really safe long-term. The symptoms are different too—chronic tendinopathies (the heel pain you described) and inflammatory back pain.

I would think that as your prednisone dose tapers, even if your PMR goes into remission, the AS symptoms may linger or get worse?

Does your rheumatologist treat AS, so could you talk to them about it? I can relate to what you mean about so many specialized providers, but I thought usually general rheumatologists treat PMR and AS, since they tend to me more “common.” That would be frustrating to have to see a different rheumatologist for a separate inflammatory condition.