Not sure what to do? ANA negative but RNP repeatedly high

Posted by jpoodle @jpoodle, Dec 18, 2023

Shifting joint pain and fatigue started about 2 years ago. ANA negative with low vitamin D. Primary care Dr ordered larger blood panel due to progressive symptoms of tingling and numbness in feet. Vitamin D back to normal with supplementation. ANA came back negative but RNP was positive/high. All other tests have come back normal: MRI of brain and neck, thyroid, A1C, B12, nerve conduction, various infections (Lyme), etc. Symptoms are waxing and waning (except tingly feet, that never changes) and have progressed to include shooting pain from my shoulder blades down the outside of my arms to my outside fingers, tingly and numb fingers, random jabs/stabbing pains all over, and this uncomfortable feeling on the top of my scalp. RNP has been high 4 times with negative ANA each time. Rheumatologist says unlikely to be a false positive that many times but other than that, not sure what’s going on. Do I just wait and deal with these symptoms until something changes? I’m managing but it’s not great to feel this way.

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windyshores | @windyshores | Dec 25, 2023

In reply to @marymaryoregon "Keep in mind when you see things posted on a public website (like Mayo) where it..." + (show)

@marymaryoregon I think you misunderstood my post. Not surprising because it was poorly worded. I was saying that the Mayo quote was apparently not true, given the content of the original post.

slkanowitz | @slkanowitz | Dec 28, 2023

Repeatedly high RNP antibodies are clinically significant and usually associated with mixed connective tissue disease (MCTD). It’s common in rheumatic diseases that antibodies will turn positive at different stages of the disease. Since your symptoms have been present 2 years, it may be that RNP was the first to show up and other antibodies like the ANA may turn positive in the future. You should have a full blood panel done for rheumatic conditions periodically at least annually. The panel should include antibodies for scleroderma, polymyositis, and lupus specifically. The numbness and tingling are signs of peripheral neuropathy (PN) that often accompanies autoimmune diseases. All treatable causes of PN should be tested for ( diabetes, low B12, low folate and thyroid and excess alcohol consumption). Be sure you are seeing a rheumatologist and consider a second opinion. You can be treated even if you don’t have a specific diagnosis yet. That will help your fatigue, joint pain and hopefully keep the PN from getting worse. I would be aggressive at treating this rather than just waiting for something else to show up in your bloodwork as that could take months or years. I would seek a doctor who will go beyond nonsteroidal anti inflammatory drugs like ibuprofen and naproxen for treatment, although those would be helpful in the meantime. Other lab results like elevated sed rate, CRP and low complement, although more general, can support a diagnosis of a rheumatic condition.