What a diagnosis to receive as a 23-year-old, supposed to be in the prime of my life. I had been working in New York City, living my dream life as a fashion assistant at Cosmopolitan magazine. Those three words made my world come crashing down, and I’ve spent the last 15 years of my life dealing with them.
Lupus is an autoimmune disease that has no known cure. My body attacks itself, thinking it’s sick when it’s not—which, in turn, makes it unhealthy. It is chronic inflammation that stays with you for your entire life. Mine manifests as fatigue, swollen joints, and rash all over my face (although most people get the tell-tale butterfly rash across the bridge of their nose).
The causes of lupus are hard to pinpoint, but it’s usually some combination of hormones, genetics and environment, such as UV exposure. (Many people with lupus are sun-sensitive, including me.) So while this was a devastating diagnosis, there was one question top of my mind, even at 23—will I be able to have kids?
The short answer is yes, in theory, I’d be able to have kids, something I’d long dreamed about, but there are many things to contemplate before doing so when you have lupus. The potential complications nearly scared me off even trying once I got married.
I wasn’t going to be able to start trying to get pregnant until 36, which put me squarely in the advanced maternal age bucket. I now have a healthy and happy toddler and learned some things on my journey. Here’s what I’ve learned about lupus and pregnancy.
Lupus is an unpredictable disease
There are several types of lupus, but I had the most common, Systemic lupus erythematosus, also called SLE. It’s more common in women than men and in non-white ethnic groups (I’m half Asian). It usually shows itself somewhere in a person’s 20s, but it could also show up later in life.
The symptoms are individualized and can appear as fatigue, joint pain, swelling, hair loss, skin rashes, heart problems, kidney problems, brain fog, and seizures.
Patients go through episodes called flares where the disease is active, which can last for weeks or even years. It’s hard to diagnose, and a flare can be kickstarted by something as simple as an accidental sunburn. Every patient’s disease manifests differently.
Every pregnancy is different
Like every lupus diagnosis and journey is different, so is every pregnancy. Spoiler alert—after years of fear and calculating the cost of IVF, I got pregnant almost immediately, much to our shock. Add in getting pregnant in March 2020 (hi, COVID-19), and my brain was doing mental gymnastics over how, when and where I’d give birth.
I had assumed for so long that this would be an uphill battle, but evidently, my body had been in a good position to conceive, with my lupus quiet for many years. Getting pregnant is a total and complete crapshoot, and the fact that I got pregnant that quickly with known (albeit quiet) health problems validates this hypothesis.
I went on to have a challenging first trimester where I didn’t eat anything for 14 weeks, but it was smooth sailing until I gave birth.
Pregnancy can cause complications
Should I attempt to get pregnant again (this time, inching closer to 40), I shouldn’t assume that my lupus will be in the same place or that my fertility will be in the same place.
Pregnancy can cause complications for lupus patients if it’s not timed correctly, says Kanika Monga, MD, a rheumatologist with Houston Methodist Academic Institute. “The goal is to conceive when the disease is in remission,” she says, noting that it’s essential to communicate with your doctors well before conception to optimize care.
“Some patients with SLE tend to have more flares, so seeing your rheumatologist throughout pregnancy is important,” Dr. Monga continues. “The patients at the highest risk include those with high disease activity or prior history of renal (kidney) disease.”
She says that there could be a higher risk of blood clotting in pregnant lupus patients and that any inflammation can worsen. “Pregnancy causes an increase in volume, so that could worsen any cardiac or renal issues in patients with organ disease related to their lupus,” she says.
You could also have complications such as high blood pressure, premature birth, miscarriage, growth problems, stillbirths, preeclampsia or HELLP syndrome, so it’s essential to communicate any pregnancy symptoms or issues with all of your doctors so they can work together to solve problems.
If you are like me, be cautious of thinking that the hormone bump from pregnancy might “cure” your lupus. While some might feel better than they have in years, Dr. Monga warns that pregnancy does not “cure” lupus, despite how you might feel. “In patients who are not in remission before pregnancy, there is a high risk of flare,” she says.
You might have to adjust your medications or get more testing done
Your OB and your rheumatologist should work in tandem to monitor you, and that includes doing more testing, especially as the delivery date nears. “A high-risk OB is also recommended, and serial ultrasounds of the heart are recommended starting between week 16 and 18 and continuing to week 26,” she says.
Because of my history of lupus and my advanced maternal age, I saw a perinatologist, which I enjoyed—it was a bunch more tests, but also more ultrasounds to check in on my baby.
If you’re on medications for lupus, you’ll need to consult your doctor for medication management. “Medicines considered safe by The American College of Rheumatology include hydroxychloroquine, sulfasalazine, colchicine, azathioprine and cetolizumab,” says Dr. Monga.
Medications such as prednisone, cyclosporine, tacrolimus, NSAIDs, TNF inhibitors and rituximab are also conditionally recommended. “Hydroxychloroquine (Plaquenil) is recommended if there is no contraindication,” she says.
“Your rheumatologist will discuss benefits and risks and decide to prescribe these medications on a case-by-case basis,” she says. She always recommends patients discuss these medications well before trying to conceive.
I chose to taper off the prednisone I had been on for over ten years before I got pregnant because I knew I’d have to do it eventually. Still, I stayed on hydroxychloroquine at the recommendation of my rheumatologist.
It’s unlikely your baby will be born with lupus, but it could happen
My baby ended up in the NICU, but not for anything lupus related, although pregnant women with lupus should be aware of the risk of neonatal lupus.
Dr. Monga says that any lupus patient should get tested for anti-Ro/SSA and anti-LA/SSB antibodies. “Get tested once before or early on in pregnancy, as this may put your fetus at risk of developing neonatal lupus erythematosus (NLE),” she says. “The risk of neonatal lupus comes with more positivity of these antibodies.”
Most of the time, these complications are temporary, but a small percentage could carry some dangerous heart conditions, so make sure you are talking to your rheumatologist.“The risk of having a baby born with lupus is higher with the antibodies present, and the risk increases if you’ve had a prior infant with NLE,” she says.
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