Please do!
Mary Ann

Okay, so I think I have finally figured out why we all have such different numbers for anti-RNP antibody tests.

* Traditionally, doctors tested for the anti-RNP number by itself, and some labs or providers probably still do this. This test has the older reference range-- I forget what it is, but I think it's expressed as a decimal, like > .01 or whatever.

* More recently, some facilities use the SM AB+RNP AB text-- in other words, they test for Smith antibodies and Anti-RNP antibodies as part of the same test. This test has *two* different results. The first is a new and different reference range in whole number 'units' for *both* Smith and Anti-RNP antibodies. Usually normal is considered 19 or 20, mild positive is 20-40, moderate positive is 20-80, and anything over 80 is a very strong positive. The second reference range is for Smith antibodies, I forget what it is, but that's in whole number units as well.

For MCTD patients, Smith antibodies are usually normal, but it's important to check this number too. I think-- though I need to confirm this-- that if you were previously had a high anti-RNP and it's getting lower OR is no longer outside the reference range AND your Smith antibodies are getting higher, outside the reference range, it means you are at higher risk for transitioning to Lupus.

Anyway, I'm still a very solid positive at 71 with no Smith antibodies. My rheumatologist, like so many of our rheumatologists, says, "I see no disease activity!"

This is insane, as I told him I woke up a few mornings nearly unable to move, and both thumbs are having significant movement problems. "It's probably the guitar," he said-- but my left and right hand have totally different stress for guitar, why do they hurt in exactly the same place? I also had a fever a few weeks ago, which I'm sure they think is the flu.

Yeah, sure. The three-hour flu.

So many of us have this experience, and I'm trying to figure out what is behind it. My two theories are:

#1 Most rheumatologists eventually go insane, just like most psychiatrists-- and, probably, psychotherapists, which is one of many reasons I started the job late in life. If I last 20 years, maybe I can quit before I become mentally unstable myself! The reason we go nuts is because the problems we deal with are so difficult to pin down-- what works for one patient doesn't work for another, and because humans try to make meaning of everything, eventually we get overwhelmed by the ambiguity of everything. It's the same issue that drives MCTD patients crazy, not knowing what's going to come next.

#2 It's also possible that insurance companies force rheumatologists to work from a checklist. Thus, if disease activity is detected, you are supposed to be put on DMARDs-- immune suppressing drugs, with plaquenil being on the mellow side of the spectrum and methotrexate or rituximab being on the harsher side. However, rheumatologists know from clinical experience that DMARDs usually do not work or often have side effects that-- given enough time-- produce a worse outcome than the illness itself. Therefore, they avoid noting 'disease activity' in the chart because it would mean they'd have to explain why they are not prescribing DMARDs. IF this is happening-- and it's just a wild theory-- I'm not sure that rheumatologists would even be aware this is the reason for their prescribing habits. They simply encourage each other to under-report symptoms in very subtle ways, and thus prescribe fewer DMARDs.

This may actually be the lesser of two evils, but it results in MCTD patients constantly being told they are symptom free even though it's a senseless conclusion. It also ensures that no one has to confront the possibility that DMARDs do not really work very well, or when they do work, sometimes do not work for very long before producing severe side effects.

Well, they keep claiming all my symptoms are from old age. Great. I also had them 13 years ago, and about 30 years ago and about 64 years ago and sometimes in between! Sheesh!
Mary Ann