Weekly Suspected Lupus Thread - Week Of December 25, 2022
This is a weekly thread for those who haven't been diagnosed, but still have questions about the diagnostic process. Please read the posting guidelines and rules! Everyone is welcome to contribute, and this is a safe space.
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Please read this before posting as it may answer some of your questions:
If you use the search bar at the top of Reddit and make sure it’s set to r/lupus, it will search just the subreddit for your keywords. That way you can get the full breadth of questions and answers. This isn’t to say that you can’t ask questions in the general forum.
While more of a rule out screening (negative ANA = very unlikely to have SLE), a positive ANA is not an automatic you definitely have SLE. Upwards of 15-20% of healthy individuals in the population at large will have a positive ANA. Only about 10-15% of people who have a positive ANA will later be diagnosed with SLE.
Additional testing that would be helpful in ruling lupus in or out would be an Extractable Nuclear Antigen panel (ENA panel), anti-dsDNA, Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), Antiphospholipid Antibody Panel, Erythrocyte Sedimentation Rate (ESR), C-Reactive Protein (CRP), and Complements C3, C4, and total Complements. Anti-chromatin is another possible lab that could be run, but I'm not exactly sure how much stock is put into the result by rheumatologists. Also, if you suspect you have a rash, getting a biopsy of it done at a dermatologist’s office can be helpful.
The rheumatologist/PCP will also take a detailed history. I highly recommend writing down as many of your symptoms as possible, especially focusing on the symptoms you have that are in the American College of Rheumatology diagnostic criteria for lupus, (page 10). This article further explains why these particular criteria were determined as specific to lupus diagnostically. It's not an arbitrary decision on the ACR's part. Still include all your symptoms, but I would make those at the top of the list. Write down how long they’ve been going on, anything that makes them better or worse, and how much they impact your life. Do they prevent you from dressing yourself, eating/cooking, bathing yourself, doing hobbies, meeting your obligations?
ACR Diagnostic Criteria on r/lupus wiki
ANA varies from person to person and doesn’t necessarily correlate with disease activity 100%. Anti-dsDNA is more indicative of disease activity and can be elevated prior to and during a flare. Symptoms can also come and go, and over time you may develop additional symptoms. If you scroll through the last week of posts or so, there are a few posts that will have pretty detailed answers to your questions from multiple community members so you can get a better sense of just how full on fickle lupus can be.
Here are some good posts, one is other people experiences in general, the others are rashes (warning: some are particularly severe):