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SSA/RO Antibody is now normal?! (Sjorgren's, Lupus, Connective Tissue..)

WkoutMomtoBeWkoutMomtoBe member
in High-Risk Pregnancy
Has anyone ever had the SSA/RO Antibody go back to normal (aka not positive) at anytime or during pregnancy? Does this lessen the risk of fetal heartblock/neonatal lupus and need to be monitored?

Last year I was diagnosed with Sjorgren's Syndrome.....lots of weird symptoms, positive ANA, high titer, etc. Rheum tested me for SSA & SSB (amongst other things) and I came back SSA positive (RO antibody). He explained what this meant as far as pregnancy and that I'd have to be monitored. I know it's low risk (2%) and my maternal fetal said he just considers me "elevated risk" and that I'd get a lot of ultrasounds. 

Fast forward to one month ago...labs drawn and SSA is apparently normal but my ANA titer is still positive and higher than it was last year. Rheum still says I need to be monitored by maternal fetal since I've had positive SSA previously.

Just curious what others experiences have been/are?
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Re: SSA/RO Antibody is now normal?! (Sjorgren's, Lupus, Connective Tissue..)

  • jskowjskow member
    Hi! I noticed nobody has responded to your question - there aren't a huge number of us lupus/sjogren's ladies here. I was diagnosed with lupus in February, and didn't want to delay having a baby, so we tried as soon as I went into my first "remission". I got pregnant in late July (yay!). In my experience, you should take whatever monitoring you can get when you have had positive antibodies. Yes, it's a slim chance that your baby will get heart block, but mine did :( I found out at 18 weeks that my baby has complete heart block. He's doing ok for now, but it's a huge wait and see situation. Even though they can't do much for it besides make sure his heart rate is staying high enough for him to develop correctly (about 55 bpm or above), I'm still going in once a week so they can monitor his heart beat and check in on him. I have my 20-week ultrasound this week - half way! If my little man can make it for about 4 more weeks, we'll be out of (some of) the woods, as his heart rate shouldn't change much after that. However, I still have to be monitored closely to make sure he doesn't start going into heart failure. Then, he has to make it to as close to 40 weeks as possible, so that he can be big enough to get a pacemaker implanted shortly after birth, since heart block is permanent.

    The moral of this story is, if there's any small risk, I say take as many check-ups as they'll give you!
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  • WkoutMomtoBeWkoutMomtoBe member
    Thank you for the response....I figured not many lupus/sjorgren's ladies here.

    So how did they find/diagnose heart block..just on ultrasound? Or were you seeing a pediatric cardiologist?

    I told them a few weeks ago at my first high risk dr appt that the bloodwork shows the SSA is now negative, he pulled it up and said I won't need to go to pediatric cardiologist for fetal echo so that's good BUT when I told my rheum this, he said they should still monitor this. The heart block is not always caught by low heart rate but more by the electrical rhythm and that has to be seen on fetal echo.

    I was at high risk/maternal fetal dr 16 weeks 4 days and don't go back for ultrasound until i'm 22 weeks 4 days. Starting in February I have to start 2x a week NST's BUT since I don't have this antibody anymore, I wonder if necessary. 

    Thanks again for your help...sounds like my risk is way down though rheum & dr don't know why SSA is now negative but I'll be getting retested for it in a few weeks
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