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Conflicting interpretations of tests: What next?
Autoimmune Diseases | Last Active: Nov 25 2:43pm | Replies (2)Comment receiving replies
@cathy2223, it is bewildering and unsettling when you feel your doctors are not aligned. It sounds like your rheumatologist ran further testing based on the results of the first test done by your PCP and didn't see the same patterns. You're right to ask questions.
Keep in mind
Many rheumatic diseases have similar signs and symptoms — joint pain, fatigue and fever. While an ANA test can't confirm a specific diagnosis, it can rule out some diseases. And if the ANA test is positive, your blood can be tested for the presence of particular antinuclear antibodies, some of which are specific to certain diseases.
The presence of antinuclear antibodies is a positive test result. But having a positive result doesn't mean you have a disease. Many people with no disease have positive ANA tests — particularly women older than 65.
The result of your ANA test is one piece of information your doctor can use to help determine the cause of your signs and symptoms. Read more from Mayo Clinic: https://www.mayoclinic.org/tests-procedures/ana-test/about/pac-20385204
Here are some questions I would want to know the answers to:
- Can we review the results of both tests together?
- What does it mean when the repeat of the ANA show normal results?
- Why did the first test show abnormalities?
- Should the test be repeated? When?
- What do we do next?
Did she go over the results of the second test with you? Has she ordered further testing?
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@colleenyoung “The presence of antinuclear antibodies is a positive test result. But having a positive result doesn't mean you have a disease. Many people with no disease have positive ANA tests — particularly women older than 65.”
I’m not yet 65, but this confuses me as well. My ANA by HEp-2 was 1:160, speckled nuclear pattern. Every other inflammatory marker was negative, yet I was diagnosed with psoriatic arthritis and put on a DMARD first, followed by a biologic by my first rheumatologist. (I went to him for a dx of osteoporosis, but he honed in on an inflammatory disease.)
A new rheumatologist I saw just this morning said that while the positive test means there is inflammation, she can’t rule out that there’s an actual disease. I know I have arthritis, but I’ve never been treated for osteoarthritis. She is allowing me to decide if I want to stay on SKYRIZI for one more round so she can observe me on it, then make a determination. I do ok on it, just have weird intestinal inflammation, with elevated temperature (not over 100°), and one time, an inflamed middle ear inflammatory response (for lack of a better word) where I lost 25% of my hearing and required a steroid injection in my ear. It resolved, and my hearing was restored, thank God, but you can imagine how terrifying that was.
Her other choice for me is Rinvoq, but that seems to leave patients more open to infection than SKYRIZI. I’m already struggling emotionally with these infections. I don’t think I want to add to that level of stress. I’ve been really scared of getting sick.
I know this isn’t an exact science, but navigating this is frustrating for sure. Thank you for letting me bend your ear!