Pregnancy and Undiagnosed Autoimmune Disorder(possibly lupus)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

KOSch
New Member


Date Joined Oct 2015
Total Posts : 1
   Posted 10/10/2015 4:03 PM (GMT -6)   
Hi! I've never posted in an online forum before so forgive me if I make a faux pas.

My name is Kristen. I'm 27 with two kids and a small childbirth education business. I'm kind of freaking out. I gave birth almost a year ago. A few weeks ago, I went into the doctor with symptoms I felt like I couldn't ignore.

I have had unexplained weight loss. (The last time I was this size was middle school.) I've had fatigue, a temp ranging from 99.5 and 100.00 all the time, headaches, chills, mouth sores, and hair loss that started up again after my normal postpartum hair loss.

Lab tests came back with positive ANA, not a quantitative test so I don't know a titer yet. So they ran another panel, and I came back with a positive SSA (3.7 AI) and a barely positive SSB (1.0 AI). My primary referred me to a rheumatologist. I know these are associated with lupus and Sjogren's and that it could be either (or both), but from what I've read I'm a little young for the onset of Sjogren's? (I'm 27.)

The day after the second lab results, I took a positive pregnancy test. When the baby was conceived, my husband and I had no idea we were looking at a possible autoimmune disorder or we would have put baby #3 on hold. Obviously, it's too late now!

But no one will tell me anything. The birth center where I had my last baby said I need to see a perinatologist. So I scored an Oct. 19th appointment with the rheumatologist, and I see a perinatologist the next week. But no one will talk to me until then!!!

Except for the nurse at the perinatologist's office who has been very nice but says I'll have to talk to the doctor about any specific questions. The most useful thing she told me was that I don't have to worry about complications due to SSA until the second trimester so I have time. (Plenty of time to freak out!)

So I'm 5 weeks pregnant and (likely?) have an autoimmune disease that may or may not be lupus. I know the SSA antibodies make me a high risk pregnancy which is terrifiying to me because I had completely uncomplicated and unmedicated births for my last two. I'm a childbirth educator so I know about high risk pregnancy, but I don't feel like I know how to have a high risk pregnancy!

Can anyone share about being pregnant with lupus or positive SSA? Am I automatically a high risk pregnancy regardless of my SSA titer (which I assume the rheumatologist will test for)?

I know that even with SSA, it's a relatively small risk that my baby will have heart problems. But that's really all I know.

And does anyone have input about whether they had to take medication while pregnant? My symptoms are very manageable (if that's even what that decision is based on).

None of the emoticons are freaking out enough!!! shocked

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 10/10/2015 8:01 PM (GMT -6)   
First off, don't freak out. It won't help you, it won't help your baby, and it will suck up valuable energy you could use for something else.

Keep breathing, take note of your symptoms, and see the rheumatologist like they've suggested.

Neither Lupus nor Sjogren's are age-specific, but these auto-immune diseases are mostly collections of symptoms, and generally it's the symptoms that are treated more than the disease -- simply because we don't yet have a better way to treat the disease. Your symptoms won't get better or worse by having a name for them, and in general they sound mild enough that I doubt anything they suggest would pose any risk for your child.

The event-less births of your current children are probably better predictors for how this pregnancy will go than any stories you are likely to find on the internet.

I would make a list of symptoms and a list of questions. Then put the lists aside and don't think about it again until you are on the way to the appointment!!

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 5:45 AM (GMT -6)
There are a total of 3,006,382 posts in 329,359 threads.
View Active Threads


Who's Online
This forum has 161832 registered members. Please welcome our newest member, bowoleku.
249 Guest(s), 2 Registered Member(s) are currently online.  Details
SantaZia, Tudpock18