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

@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.

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.

Did you figure this out yet? I have all the exact same symptoms, including a negative ANA with elevated RNP antibodies. I also have intracranial hypertension and the feeling on top of my scalp has evolved into what seems to be very similar to a very deep fungal infection/kerion, potentially dissecting cellulitis of the scalp. Also atypical ANCA, high CRP. Waiting for rheumatology, but research is leading towards MCTD or lupus. Curious if you got anywhere.

I feel for you and know how frustrating it is to have all these symptoms and no answers or specific treatment. I lived with classic lupus symptoms for 10 years with neg ANA, then it finally turned positive at the lowest level. The weird and frustrating thing about autoimmune diseases is that symptoms can precede lab evidence by months/years and drs don’t know what to do with you! The high RNP usually correlates with Mixed Connective Tissue Disease and I would make sure you have had a blood test panel that includes anti dsDNA, anti SCL , SSA SSB, anti Smith, anti Jo, complement C3,C4, sed rate, CRP etc. There’s a great test called Avise CT that tests all this stuff and is more sensitive. Your rheumatologist should order that for you. I had a negative ANA. on regular labs and a high positive on the avise ct test at same time. It’s done differently with a more sensitive test. I would also ask to be started on a drug like Placquenil which is usually first line treatment for many of the AI disorders. It takes 2-3 months to kick in but can make a difference. Good luck and keep us posted on your progress!

With atypical ANCA, high CRP and your scalp symptoms, I would recommend researching vasculitis. There are many different types, rare autoimmune diseases and a special clinic like your local university rheumatology clinic or Mayo, etc would be appropriate. I have 7 AI disorders, vasculitis being the latest to develop and because it’s rare, you need a special rheumatologist who deals with it and understands it. A dermatologist could do a skin biopsy if you have a rash or lesions on your scalp. If it’s vasculitis, topical steroids or oral Prednisone may help. Good luck and keep us posted on your progress!