SSA Positive/Pregnant/An Eventful Month

10-15-2015, 05:55 PM

Hi!

I haven't posted here before. I'm looking for some help understanding these "semi-quantitative" test results.

I went into my GP with weight loss after the birth of my son in November (way more than you would expect postpartum from a healthy-weighted person). She checked my thyroid, and it was fine.

I went in again just a few weeks ago with continued (though slowed) weight loss, fatigue, all-day every-day fevers between 99 and 100, mouth sores, headaches, hair loss, and on-and-off sore throat. (I know those are all very generic symptoms! I don't have any of the "defining" symptoms of Lupus or Sjogren's.)

My GP ordered several labs. The only thing that came back not normal was a positive ANA. But it was one of those non-quantitative tests. No other info. Just "positive". My SED rate was really low, and negative for Anti-DNA antibodies. So they ran labs for other antibodies.

SSA came back 3.7 AI and SSB 1.0 AI. Everything else normal. C3 and C4 normal. So they said to go see a rheumatologist (who I have an appointment scheduled with). The day after getting those labs back, I found out I'm pregnant. So, I've been doing a lot of research about SSA antibodies in pregnancy, but risk to the baby is related to levels, measured by U/ml. And this AI reading, as far as I've been able to discover, is a "semi-quantitative" reading as opposed to U/ml which is much more specific.

My real question is-With an SSA of 3.7 AI (where under 1 is normal), is there any chance my rheumatologist does the quantitative SSA test and says, "Oh, hey, it's normal! You don't have Lupus or Sjogren's, and you won't have a high risk pregnancy after all!"? I just don't know what to think of this "AI" thing and can't find much about it.

(Does my question even make sense? I feel like I've entered a weird autoimmune disorder research land the last week, but haven't ever had the opportunity to talk to real people who know anything about it.)

Thank you in advance for any input!

10-15-2015, 08:03 PM

Nicole, hi & welcome. First, congrats on your son & on your new pregnancy!

Some doctors I saw didn't even realize that SSA & SSB can occur in lupus. That you know this already & have been reading makes you a smart patient! Moving on... The symptoms you list occur in lupus often but they aren't diagnostic. Instead, there's a set of established criteria that you may read in the sticky post section (stickies are the permanent info posts located above the thread list). Usually, but not always, you must meet 4 or more of the 11 to sustain a dx of SLE. Criteria may be met serially, over time: envision checking each off in indelible ink, once met.

SSA is only one of many AB's possible in lupus. My guess is that your rheum will retest the whole gamut. (Rheums usually prefer certain labs, ones known for expertise with the AI tests.)

Sjogren's has its own set of diagnostic criteria. Tests that help to prove it include several eye tests (for dryness). The best test, though, is lip biopsy.

One of my lupus hardcovers devotes an entire chapter to pregnancy. The author (a famous rheum) says that the risk for neonatal lupus or congenital heart block is actually "very small". But he doesn't mention levels. Neonatal lupus is cutaneous and mild, and it resolves. Congenital heart block is the bigger worry, but there are tests for it (fetal heart ultrasound) & various treatments available. You could borrow this book & others from the library. Look for ones written by rheumatologists.

The women who face greater risks are those with organ-threatening lupus (kidneys, etc.), pulmonary hypertension, uncontrollable BP, myocarditis, antiphospholipid antibodies (those can cause blood clots), etc. This is not to minimize your concern about SSA---I'd certainly want a rheum to address it very thoroughly! When is your apt? Keep us posted, OK? Warm wishes, Vee

P.S. Sorry, I don't know what that "AI" notation means.
P.P.S. I'm an SSA lupus patient myself. This group is the most photosensitive of all. If this is lupus, you'll need to avoid UV rays from sun---and no tanning beds, either.

10-24-2015, 10:24 PM

My daughter is SSA and dsDNA positive and has had two fairly uneventful pregnancies. Her first one she had a lot of pre term contractions but delivered a healthy baby boy at 37 weeks. The second one was also a boy. No problems with the pregnancy but he has just been diagnosed with systemic JIA. He is one.

SSA Positive/Pregnant/An Eventful Month

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