I’ve sat down with hundreds of young women as they find out they have lupus. Once a diagnosis is made, the conversations are largely one-sided. Explaining what lupus is, how we diagnosis it, and what we are going to do about it can take a while. I’ve seen every possible emotion you can think of wash over the faces of women as they absorb this news: relief at an answer, sadness at what it means, anger at why them, and then fear for their future. The fear, for many, circles around concerns over the possibility of a pregnancy with lupus.
Lupus can affect anyone, but young women are the most commonly affected. Women in their teens, twenties and thirties, or what we call in medicine, the child-bearing years. Discussing issues related to pregnancy is a necessary component to a well-rounded lupus treatment strategy.
Planning for pregnancy
Those living with lupus can get pregnant just as easily as those without lupus. The condition itself has no impact on one’s fertility. However those with lupus do need to go into any pregnancy with a plan. And that plan has to include controlling the lupus. The best chance of having a safe, healthy pregnancy is to have well controlled lupus for, at least, 6 months. This means no flares and no need for increased medication.
We also must consider the medications. We us a number of medications commonly used in lupus, some are safe during pregnancy, some are not. It is key to make sure you are well controlled WHILE ON safe medications. If someone is currently taking medications not considered safe while pregnant (ex. mycophenolate mofetil, cyclophosphamide or methotrexate), they will need to change to safe medications before trying to get pregnant.
And just a note on IVF – yes! You can safely use IVF when you have lupus. This issue was a legitimate concern within the rheumatology community, as we know hormones play an integral role in Lupus. Thankfully, data has shown that utilizing IVF can be safe with lupus.
The risks of pregnancy with lupus
Rheumatologists insist on having well controlled lupus on safe medications prior to a pregnancy because with active lupus, the risks to mom and baby can be catastrophic. Even under the best of circumstances, lupus is considered “high risk,” and is best cared for by a High-Risk OB (an obstetrician trained in high-risk pregnancies). Lupus moms carry higher risks of developing infections such as urinary tract infections and kidney infections. They also have a higher risk of developing preeclampsia, gestational diabetes and HELLP syndrome; all conditions that can possibly lead to pregnancy loss or need for early, urgent delivery. Pregnancy loss and early delivery are more common in those with lupus (even when well controlled, unfortunately) when compared to those without lupus.
5Ps for lupus pregnancies
This is where I like to enact my father’s 5P method – Proper Planning Prevents Poor Performance. (I have since learned this quote is actually from James Baker, Secretary of State under George H.W. Bush – but it will always be my dad’s quote to me) Yes, the listed risks can sound scary. But with proper planning and careful monitoring, we can identify them early. When first pregnant, or even when trying, your rheumatologist should check certain autoantibodies to assess risk level. The prescence of Sjogren’s Antibodies, anti-SSA/anti-SSB, suggest a higher risk for fetal heart problems (described in more detail below). We also check Antiphospholipid antibodies. The presence of these autoantibodies alert your doctor to a possible risk for miscarriage and can even justify the use of certain medications to lower that risk. Knowing these results and having a trusted High-Risk OB and Rheumatologist tearm are key components to a successful pregnancy.
When baby comes!
Will my baby have lupus? The short answer is: most likely, no. Genetics play a role in the development of lupus, but it is certainly not 100%. The likelihood that a newborn, or even small child gets lupus, is very small. Neonatal lupus does occur in a small minority of newborns to lupus moms (more frequently with moms who are +anti-SSA or anti-SSB antibody), however, thankfully, this is a temporary phenomenon. Typical symptoms include rashes and abnormal blood cell counts and is rarely severe.
Anti-SSA/anti-SSB antibodies also alert doctor’s to the risk of baby having congenital heart block. Congenital simply means “born with” and heart block is a condition where the electrical circuits that control the heartbeat do not work properly. The result, an erratic heart beat, can be fatal if not recognized and treated early. Thankfully, congenital heart block can be detected before baby is even born and we have established strategies to deal with it.
Every lupus case is different and every person living with lupus has their own set of unique circumstances. However with proper planning and an open discussion with your doctor, those with lupus can have successful pregnancies! (FYI – to learn more about breastfeeding with lupus, check this out)