This is funny – I just googled about indeterminate anti-dsDNA, and came to this post and was reading along I was like oh that’s helpful, and after the mention of the doctor in LA, I realize it was a question I had asked years before! It was originally me asking the question!
I can confirm, for others reading this or concerned about the fluctuation of antibodies, that I had my ANA test in three weeks apart, with one being 1280 and one being negative. Within three weeks of each other.
So, if you are ANA-negative, don’t let that make you think that your symptoms or your illness is all in your head or that you don’t really have a disease – it’s totally possible that they didn’t catch that positive ANA that they want so badly because they just didn’t test during the right week, or who knows, even the right day! I wonder if such fluctuations are common when you don’t have, as far as you know, organ involvement, or you are considered to have undifferentiated disease, etc. my complement levels – the C3 and C4 - those move slowly and consistently over time ( is there slowly going down over many months or year, or slowly going up) reflecting plaquenil dosage and also disease activity. But yeah, the ANA - I have no idea when or why it’s going to turn out positive or negative.
I haven’t had any borderline anti-dsDNA, nor positive, results since that one time - it could be 10 years ago now!
I googled this question today because I will be seeing a new rheumatologist in August I want to have all of my
“proof“ and my full history in front of me. I’m also filling out paperwork for continuing disability coverage, which really scared me and has overwhelmed me for weeks now! They are such simple questions but to answer them, like, “Which medications are you currently taken and/or have taken in the past year?” Which doctors have I seen, please list all tests and health issues... I printed out several copies of the page where they give you extra room, because I’m going to need about seven extra pages!
Anyway, thanks again, Clare, for your help with this so many years ago and even still today!