Do I even have PSA?

Hi All

As many of you know, these conditions are very frustrating. I am now actually wondering if I even have PSA or is it something else? Here’s why:

  • main symptoms so far are enthesitis and tendon pain that started about 3 months back…fairly widespread.
  • all normal bloodwork, hand, feet and pelvis xrays normal. No visible arthritis or erosions.
  • no visible swelling and good range of motion in all joints.
  • podiatrist told me today that my feet look great…no swelling and no xray issues…but they do hurt!
  • all other AI conditions like RA, Lupus, Lyme, all negative
  • condition seems to be gradually improving after 5 weeks on sulfa and 1 shot of enbrel

Has anyone else or does anyone know someone who may have actually had another condition? My doc is good, suspects some kind of SPA but focused on PSA because of some minor eye and skin irritation.

I am also HLAB27 + which is highly correlated with these conditions.

Hate to say this but it sounds like I presented originally but without being HLAB27+. Loads of pain and not much else. The much else came later, sadly. Glad you’re being treated appropriately though and early and it seems to be improving.

And I initially wondered did I have PsA too.

I don’t personally know of anyone who has had anything similar that turned out not to be PsA, but of course most people I know with those sorts of symptoms are here on this site - there will be possibilities out there. Of the more common that I’m aware of, possibilities could include non-erosive arthropy associated with IBD (but then you’d need to have IBD and I think you’d notice), non-erosive arthropy associated with Coeliacs (it’s possible not to notice Coeliacs, but not likely), sudden onset polyarticular OA (yes, this is a thing, but I’ve never seen it reported to include the spine and I think your other post mentions that - it also tends to show changes on scans pretty quick I think), and less commonly I imagine there are other connective tissue diseases that might show a similar pattern if they are mild (though I understand most of them will have some sort of blood marker that your doc has likely tested for).

I had the guinea pig approach (for my possible atypical IBD, not PsA), where they put me on a drug that should resolve it (changed from Enbrel, which was great for my arthritis, but not my gut, to Humira, which does both), and figured that it was probably IBD if it worked. It did.

In your case, it is good to see your Rheumy being proactive, and I’d say that if after another 3 shots or so of Enbrel you are seeing substantial relief, the chances are pretty high it is at least an SPA, if not PsA. If it doesn’t work well, it still isn’t excluded (not everyone responds to Enbrel).

Initially I found the uncertainty of not knowing what it was (prognosis, disease control - all uncertain) really difficult, but after a while I realised that SPA and PsA are usually treated so similarly (in that the same meds, exercise, processes are used, but tailored to the individual), so stopped being hung up on what mine was, and worked within the framework to try to figure out what worked for me.

My Rheumy won’t diagnose PsA unless he sees dactylitis (regardless of CASPAR). I thought this was sheer bloody-mindedness, and was very frustrated about it initially, until I saw the comparable approval processes for the Biologics on PsA versus sero-negative RA (which is the box our government puts SPA in). Glad the formal diagnosis for me is still sero-negative RA, that man knows how to work systems - much better approval processes and many more medications available. I fit CASPAR and am happy that I belong to this community, even if I don’t fit the labels well (they couldn’t find one that fit for the IBD either…:roll_eyes:).

I understand how frustrating it can be not knowing. We are all unique though (nowdays I just think of myself as ‘special’ :joy:), and regardless of what it is, you will still need to go through the trial and error of finding out what works for you (exercise, rest, alternating the two? pacing? ice, heat, arthritis sprays? biologics, traditional dmards, NSAIDS? meditation, laughter, family time, sleep?) Those are the things you can control, and they are well worth your attention :slight_smile:

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Hey Rob, you didn’t mention anything about skin problems/issues or “interesting” nails. How about bowel complaints? Skin problems in your immediate family?

There was no obvious cause for my extremely painful feet either (on physical examination or x-ray), until suddenly an x-ray showed joint erosions of the mid-foot.

After being diagnosed with PsA, an MRI of the foot revealed bone marrow oedema, which, they say, really hurts. I’ll agree with that. It wasn’t until my biologic got traction that “that” foot pain (kind of like burning pressure) went away. But by then the damage to the joints was severe.

It’s safer to assume that PsA is what you are dealing with, and good to hear that you are making an aggressive strike back.

No one knew what was wrong with me at first, and painful feet was one of my first symptoms. They tested for lupus, RA, you name it. It wasn’t until I went to a rheumatologist that she took one look at me after listening to my ailments and was like, “Well, it is pretty obvious you have PSA.” The future symptoms proved her right!

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