ANA test follow up results - anyone else experience this

I was diagnosed w/systemic Lupus at the age of 41. After seeing many Rheumatologist over the years, it has been a frustrating journey to find the right doctor and care for me. They don't listen to you! Too many years on prednisone has made by bones worse. I have had times when my ANA was positive and times when it's been negative. I am now 65 and doing well managing my arthritic symptoms with supplements and Acupuncture. However, I did a Reclast bone density infusion in June and it was the worst time I have ever felt the way I did. My hands and elbows swelled up so bad I couldn't touch my face. So they had to prescribe Prednisone (the one bad drug that really helps) to calm my auto immune response down. It has taken almost 3-4 weeks for my hands and elbow to recover. Not doing Reclast again. Be your own advocate is what I have learned over the years. If they don't help you, then find someone who will.

Yes, not having a definitive diagnosis at the start is probably typical.

The science behind autoimmune is fairly new, and the diseases are not well understood.

The symptoms vary widely from person to person. And they change over time. Over the years, I have had various diagnoses. I have come to realize that the earlier ones weren't wrong; they were the ones that fit the symptoms that I had at the time. More symptoms = more evidence = clearer diagnosis.

It isn't the doctors' fault, unless they don't listen to you or unless they don't keep up with research and new medications.

The key is to find a doctor that you trust. I agree with the other writer who said that younger doctors can be better. Ask the nurses for recommendations. They work with the doctors and know them well. Be sure to ask in private.

Unfortunately, we patients need to get informed about the diseases. Give yourself time to process. Use really reliable sources, like the Mayo Clinic and Cleveland Clinic. Many people have had good results with alternative treatments.

Be careful not to do more than one intervention at a time. Otherwise, you won't know which one is helping or hurting.

Best of luck to you. This site is a good place for support : ) You are off to a good start by coming here.

I too have had ANA test that come back positive and when ordered by a different Provider the ANA may come back Negative. I have learned through this that there are DIFFERENT ANA test which can be ordered. So, your results may be the difference between which of the ANA test Code submitted with your blood sample.

thank you for that. They have all been done by a Rheumatologist so I would hope they were the same test, but something to note and ask about.

I had a panel of 13 different ANA tests ordered by my pulmonologist. Two came back positive, resulting in referral to a rheumatologist. He told me the two particular tests have false positive/negative results as high as 50% and he uses them as a diagnostic starting point. We are now awaiting the results of several more sensitive tests that are only done by a few labs to provide a more definitive diagnosis.

@itsmeagain
I seem to be lost on the subject of ANA and ANCA. Could someone please clarify?
Thanks

ANA tests for the presence of antibodies in general. ANCA tests for more specific antibodies. Here's some info from AI: 'The ANCA test, or Antineutrophil Cytoplasmic Antibody test, is a blood test used to detect and measure the levels of ANCA antibodies in the blood. These antibodies, which target proteins within neutrophils (a type of white blood cell), can indicate the presence of autoimmune diseases, particularly vasculitis and inflammatory bowel disease (IBD).'

@itsmeagain
Thank you so much.

I was diagnosed with mixed connective tissue disease (MCTD) but repeatedly had negative ANA tests, as did my dad. I went along like that for 20 years living on Tylenol, a beta blocker and Celebrex. We both took Prednisone and it was awesome for me. I was able to go back to work after adding an immunosuppressant and seemed to be in remission for about 10 years. My dad was in his 70s so it just suppressed pain and he swelled up, making it hard to walk. I don’t know if he took anything else.

I know it sounds bad, but be glad you have definitive results for ANA as you can get specific treatment. The only results I got was for Myastenia Gravis and I’m grateful as I can’t imagine dealing with this without the proper medication

I'm waiting on test results too, I can relate! I've had low positive ANA (1:80) and elevated CCP for the past 5 years. My ANA patterns have been cytoplasmic/nuclear speckled and once it came back cytoplasmic/reticular/AMA (AC-21). That led to no definitive diagnosis. Because of the intermittent fevers and extreme fatigue, along with multiple joint arthritis, my PCP referred me to a rheumatologist (second one for me). This doctor so far seems to be what I've needed - he's doing extensive tests but began my visit with looking at my damaged hand joints and said that told him what he needed to know, not any previous tests; he said it was clear that I have some type of inflammation. Out of the group of tests so far, the CCP came back normal but I had a positive ANA, a high CPK and just yesterday, a positive HLA-B27 result. These tests can be confusing and disheartening- positive one time and normal another. I am more hopeful with this doctor however since he seems to focus on the clinical symptoms and not simply test results. I think if you have a doctor who takes that view, and you are patient with the process, that you may get the treatment you need for your symptoms, even if the 'label' for the autoimmune disease is not 100% clear.