ANA Is Negative: What Is Next?
Last updated: August 2023
I was diagnosed with lupus in December of 2020. I was in extreme pain for years before that. I went to every scheduled doctor's appointment. Every time I have expressed my pain, I felt like they thought I was a liar, trying to get free drugs. All of this despite my chart showing I haven't taken any prescription drugs. You would think, maybe, They'd see I have a valid complaint.
Rheumatoid arthritis diagnosis
I received an X-ray in 2016, it showed Rheumatoid Arthritis. I was given Tramadol. That was a horrible experience. I started experiencing stroke-like symptoms, eye troubles, and dizzy spells. It was like I woke up drunk. I don't drink.
It wasn't until 2020 they started testing me for pain markers. Well, that's how it was explained to me. A positive ANA called for more testing, which showed my numbers for lupus (SLE) was 180. In 2022, a rheumatologist started me on hydroxychloroquine 200 mg twice a day. I took it for 8 months.
My ANA is negative: Do I still have lupus?
Ok, fast-forward to May 2023: My ANA is negative! Am I cured? Does lupus go away? My rheumatologist told me not to stop taking the medication. If it's negative why do I have to continue the medication? I feel somewhat normal. I haven't in 10 years. But I wake up scared every morning wondering if today the flares start back up. When I can sleep at night, I have anxiety before I shut my eyes. I am dreading what's to come. I feel I'm in the eye of a storm. There is more to come. Without pain medication, I don't think I will handle it well. It was hard enough with opioids. Those were prescribed from November 2021 to December 2022. I have been off them for 6 months now.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?