Autoimmune diagnosis criteria

June 8, 2021 5:42 AM

Paging Dr. House, is it lupus?

My CRP and sedimentation rate have been elevated for > 1 year. My sed rate is now 90.

Over the winter I developed a vasculitis rash over half of my limbs. My primary care doc said "huh, here's some steroids", and said I should check in with rheumatology. I've also had occurrences of a patchy, raised, itchy rash on my back - like, 1" diameter patches. This is all in the past (no rash going on presently), but I have pictures.

I've become rather photosensitive in the last year, and my fingers hurt. One finger's middle joint swells up at times, which the rheumatologist noted with more concern than I usually pay to it, it's just ... that finger, to me.

At rheumatology, bloodwork shows my ANA is now 160 (both homogeneous and speckled). I'm very positive for anti phospholipid antibodies, which I understand will need repeated in 3 months, but is its own disorder.

Negative for anti-dsDNA, anti-Ro, no proteinurea, no seizures, no malar rash, no anemia or leuko/thrombocytopenia.

The rheum's diagnosis is: "pre-lupus" which is also known as incomplete lupus, or undifferentiated connective tissue disorder. She started me on plaquenil, to prevent joint damage or future rashes.

From what I'm reading about the criteria for diagnosis, I am positive in 4 of 11 categories. I'm unclear on why this is not a lupus diagnosis.

I will ask the doc when I see her next (the bloodwork came back after the visit, and she's not especially attentive over messages so far), but I'm looking for experiences of MeFites in the autoimmune area.

I'm not sure how to think of "pre-lupus", like, I may or may not be rather sick. It sounds pretentious to me, like if I said it to anyone else I'd be reaching.

posted by anonymous to Health & Fitness (6 answers total)

Not a doctor, but have worked on a major lupus diagnosis research project. Lupus (like many autoimmune conditions) is notoriously hard to diagnose - so much so that major research efforts to improve the diagnostic criteria and process are ongoing. Some people have many positive signs but never seem to develop 'full' lupus. Others clearly seem to benefit from treatment despite having a complex of symptoms that doesn't exactly fit the diagnostic criteria. All this is to say that lupus is a very complex syndrome. Rather than focusing on diagnosis per se, I think the doctors I've worked with in this area would advise you to focus your energies on building the best possible working relationship with your rheumatologist and working together to find treatments/approaches that best manage your symptoms, regardless of what label fits you at a particular moment in time.
posted by Ausamor at 8:58 AM on June 8, 2021 [6 favorites]

I'm not sure how to think of "pre-lupus", like, I may or may not be rather sick. It sounds pretentious to me, like if I said it to anyone else I'd be reaching.

"Undifferentiated connective tissue disorder" is an autoimmune disease; I think that 'pre-lupus' tag is throwing you off?

US resources:

- Undifferentiated connective tissue disease (UCTD) is an autoimmune disease that can affect several systems in the body. - NIH rare-disease database

- Maybe it’s the word “undifferentiated” that makes undifferentiated connective tissue disease (UCTD) seem a little vague. But it is a real medical condition. This autoimmune disease can share symptoms with other chronic conditions, but it’s a distinct condition that is often challenging to diagnose. - creakyjoints.org

- As many as a quarter of all patients seen by rheumatologists have UCTD. - HSS.edu

- Disability Evaluation Under Social Security, 14.00 Immune System Disorders, Adult: 14.06 Undifferentiated and mixed connective tissue disease
posted by Iris Gambol at 9:53 AM on June 8, 2021 [2 favorites]

I have lupus, and when I once mentioned that to friend, she told me she had lupus, too. Her symptoms are totally different than mine. When I was diagnosed with lupus, my rheumatologist showed me a sheet with various symptoms assigned different point values. If the point values added up to 11 or more (or whatever the number was), you have lupus. Maybe that’s the criteria for diagnosis you mentioned. If my points added up to 10, would that be pre-lupus? I don’t know. I’ve never heard that term before. My rheumatologist said this list of symptoms and the point values are updated annually.

From my personal experience as a patient, I see the word lupus as being a catch-all term for an autoimmune disease. Symptoms and their severity seem to vary quite a bit. I wouldn’t worry so much about what to call the disease. If you feel uncomfortable with “lupus,” say “I have an autoimmune disease.”
posted by Leontine at 10:17 AM on June 8, 2021 [1 favorite]

I have psoriatic arthritis which is an autoimmune disease. Or condition? I don't know - I'm new to it. Your rash plus your joint pain rings some bells for me. In my case I was told that I was at risk for the arthritis when I was diagnosed with the psoriasis. And then when my joints started getting bad - I knew who to talk to about it. It was my finger that started first - note that PsA is typically asymmetrical while something like rheumatoid arthritis is typically more symmetrical. In only 5-6 months between the start of the joint pain and the diagnosis and the start of treatment - my worst joint, which is one finger, is permanently damaged. I take an injectable biologic which helps. I am absolutely not a doctor and know nothing to nothing about lupus nor blood panels. But a visit to a dermatologist could also be of use imo.
posted by rdnnyc at 11:15 AM on June 8, 2021

Hi - another UCTD person here... it is a bit of a mindf*ck for sure, but it is a real condition that sometimes progresses to lupus and sometimes does not. I've been diagnosed for 5+ years now, and here is the reality I've settled into...

- plaquenil and a gluten free diet keeps the worst of my flares/symptoms at bay. my symptoms tend to be varying combinations of joint pain, brain fog, and weird rashes on my face (but not the classic lupus butterfly). (Not everyone makes the dietary changes but they work for me.)

- on the occasions when I have a no-kidding flare, I take prednisone, but that's pretty infrequent these days (knock on wood). Most of the horror stories you hear about prednisone are from long term use, but I haven't had to do that so far.

-I had to radically revamp my exercise regimen -- I used to enjoy running but the high impact stuff is really a no-go for me now, as it triggers flares for me. Now I do yoga, walking, strength training, and rock climbing as circumstances permit.

- I see my rheumy every 6 mos for updated bloodwork, etc. it's always abnormal but typically in the same way/to the same degree as the last time, so we just keep on with the current treatment plan. If it comes back with weirdness (sometimes happens in my kidney or liver values), we monitor more frequently for awhile and it typically goes back to my (abnormal version of) "normal."

- Early on I identified more as a "lupie" because I think I expected the UCTD to progress quickly to lupus. But it hasn't and it really might not ever. So when it comes up, I typically identify as a "spoonie" or as someone who has "an automimmune thing." In cases where people need to know more, I call it UCTD, and explain it as "an autoimmune condition that wants to be lupus when it grows up."

I hope this helps you. UCTD is definitely a real thing, but it is totally manageable. Pay attention to your body (and all the crazy mixed signals it gives you), and over time you'll likely be able to find a combination of lifestyle changes and meds that work for you. I wish you all the best!!
posted by somanyamys at 5:55 AM on June 9, 2021 [2 favorites]

I also have psoriatic arthritis, same rash description (started on my back), same asymmetrical finger joint pain. Just another data point, although I'm sure your rheumatologist considered PA.

I also take an injectable biologic.
posted by Pax at 10:48 AM on June 15, 2021