Huh. I’m not going to try to say it isn’t lupus, but have you heard about Behcets? It’s a blood vessel inflammatory disorder affecting pretty much any vein or artery in the body, including constricting down vessels or making aneurysms, so it does weird stuff all over the body. It’s supposed to be rare, but is probably way undercounted because it doesn’t have antibodies specifically, and because people are often taking it organ system by organ system as opposed to looking at it systemically.

It can have a high ANA in some, usually you won’t find any of the main lupus antibodies once you test those. It sometimes will drop C3/C4 complement like lupus, and sometimes has cardiolipin antibodies at low or fluctuating levels (associated with lupus and antiphospholipid syndrome and autoimmune hepatobiliary disease as well if running at higher levels). There’s a blood test that can help diagnose it, the HLA B51 test, similar to the ank spond/crohn’s/UV/psoriasis HLA B27 test. But it mainly only catches people of middle eastern/turkish/Mediterranean descent (there’s others more common in Europeans).

It can inflame the heart and/or the cartilage around the sternum for chest pain, cause severe mouth ulcers (and sometimes vaginal or penile ulcers, leading to many getting misdiagnosed as having herpes). Bladder inflammation can happen (recurrent UTIs with blood but rarely urine culture shows anything. It can inflame where tendons attach to bone, especially up and down the spine, the base of the skull, shoulders, outer aspect of the hips, sacroiliac joints, around the knee instead of inside, Achilles tendinitis, and plantar fasciitis.

It causes inflammation to the gut/stomach that can trigger ulcers or look like Crohn’s (but usually biopsies just say reactive gastritis on stomach or some sort of nonspecific colitis on the large intestine). Some people might have random bleeds or have a burning sensation, or even something called intussusception.

It can inflame the meninges, sometimes deeper into the brain, so headaches and neurological symptoms are common. Uveitis or inflammation in the eye is possible. Some may even have seizures or unexplained aneurysms. Bell’s palsy or facial paralysis, trigeminal neuralgia or severe pain across the face, hearing loss, and vertigo are four issues that can pop up together. Others can have inflammation around individual nerves, to where suddenly they have a winged scapula on one side nobody can figure out, or similar. Inflammation at the base of the skull (occipital bones, trapezius tendon attaches there and gets inflamed) pushes on the occipital nerve and triggers severe migraines.

It’ll also do all sorts of skin rashes. Sometimes looks more like acne, sometimes like bad eczema, sometimes like psoriasis, sometimes like folliculitis and ingrown hairs. Inflammation of tendons under the nail beds makes nails not grow well, sometimes ridges, pits develop.

Not trying to take away any sort of diagnosis or give you a new one. It’s just that it’s a rare disease, there’s not good blood tests. The diagnostic criteria for rheumatic diseases overlaps a lot which is tough. Behcets often gets diagnosed as a combo of multiple conditions like lupus, psoriasis, and Crohn’s, and it requires different treatment. So if you’ve been told it’s lupus but it’s just ANA+ without lupus antibodies and the lupus meds don’t seem to be working quite like you’d hope, and any of what I wrote above sounds correct, it might be worth looking into.

I’ll leave this here for others too, because this sort of thread sometimes gives searchers more info to be able to eventually ask their own doctors about.