My Lupus Symptoms Went Away During Pregnancy—but Returned With a Vengeance Postpartum

Systemic lupus erythematosus, a.k.a. lupus, is a chronic autoimmune condition that causes the immune system to attack healthy tissues and organs. It can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Symptoms usually come in waves or flares, and then subside for a period of time. Research shows that during pregnancy, women with lupus have a higher risk of complications—that can affect both them and the fetus—including increased rates of infections, blood clots, and preeclampsia (a serious condition that causes persistent high blood pressure and potential organ damage), higher miscarriage rates after 12 weeks; fetal growth restriction; and preterm delivery. It is possible, though, to have a healthy pregnancy with lupus. Working with a high-risk ob-gyn is the best way to make sure you and the fetus are monitored throughout and that any issues can be caught and addressed as early as possible.

Below, Kiana Cornejo, 24, shares her story about being pregnant with lupus and the challenges she has faced both during and after. Here is her story, as told to health writer Amy Marturana Winderl.

I was diagnosed with lupus when I was really young, around 11 or 12. Even then, they brought up pregnancy, and I was like, ‘Why are you talking to me about this?’ But I guess they had to have these conversations because I was on medications that could affect a baby. They did also tell me that there could be complications with pregnancy. When I started getting older, I thought about how I really did want a kid of my own one day, and that it sucked that I had to think about it in a way that a person without any medical conditions didn’t. I thought, What if I get pregnant? If my child has complications, how will I deal with that? Or what if I have complications and can’t take care of my child?

And then when I was 21, I got pregnant. My daughter wasn’t planned; it was a surprise. So when I found out I was expecting, I was like, Oh my God, what am I going to do now? I immediately called my doctor at Hospital for Special Surgery (HSS) and told him I had taken a positive pregnancy test. He told me to come into the office so that we could go over my medication regimen and see what would be safe for me to continue. Thankfully, at the time, I was on medications that were fine for me to take while pregnant. However, my doctors had to really stay on top of my bloodwork. There was one time that some of my levels came back concerning, showing certain antibodies that can signal problems with fetal heart development, but every time after that, things looked okay.

They sent me to see a high-risk doctor, who I saw throughout my pregnancy in addition to my regular ob-gyn. They were monitoring the baby and making sure that she was growing appropriately and that her heart was developing okay. And then my regular ob-gyn was making sure that I was healthy. Because he was aware of my medical condition, I had his personal phone number and he told me to call him for anything. I was put on high blood pressure medication to prevent preeclampsia, which is more common in pregnant people with lupus.

I was scared at the beginning because even though the doctors did say that my medication was safe for the baby, I still worried. What if it’s not? I am on steroids…. I know steroids do have side effects for me, so what if they go to the baby? Every time I would get bloodwork, I was always anxious. I didn’t even want to take Tylenol; when I would use my phone, I worried about exposing myself and the baby to too much radiation. I just wanted her to be safe. I thought if something happened to her, it would be my fault. That anxiety continued throughout my entire pregnancy. I felt like taking medication was selfish and that I was putting too much stress on my baby, though my doctors always reassured me that it would be okay.

Interestingly, when I was pregnant, I felt like I didn’t even have lupus. I did have swollen feet and swollen hands, and I was extremely tired—the same things that I believe any pregnant person might experience. But I didn’t really feel lupus symptoms again until after I gave birth.

In March 2023, at 38 weeks, I was induced. My doctors decided it was best to plan the induction and avoid me potentially having a flare when it came time to give birth. At the hospital, I did have complications. I was losing oxygen, so they had to put the oxygen mask on me. I also spiked a really high fever. They took the baby straight upstairs to the NICU; I couldn’t keep her in the room with me. They also wanted to run tests on her and make sure that she didn’t have any viruses or anything, because they didn’t know where my fever came from.

Her father came down to see me and had this face—I knew something was wrong. He said that she had a whole bunch of tubes on her and was hooked up to machines, but he didn’t want to tell me because he already knew how anxious I was during the pregnancy. I said, “I told you I should have never done this. This is my fault. I should have never taken these medications.” And he said, “You’re not selfish. You have to take care of yourself.”

Ever since having the baby, my lupus symptoms have been way different than before. I feel like every day I wake up and there’s something new. Like the other day I woke up with a bruised eye. I bruise easily now, which was never the case. Sometimes I get very upset really easily, and I feel like my anxiety has been worse than it was before. I’m not totally sure if it’s my lupus that’s causing me to be really nervous or just being a parent.

Right now, I’m on a new lupus medication, plus scalp injections to prompt hair growth, because I am going through a flare and am losing a lot of hair, which never happened to me in the past. I have a lot of bald spots, and I recently went to shop for a wig because I’m losing so much hair. I’m also breaking out into hives constantly; I’m always itchy. My symptoms before pregnancy seem so mild in comparison. So I’m just waiting for my new medications to hopefully kick in.

I’m currently a medical assistant in oncology. I wanted to go to medical school because of the impact that the nurses and doctors have had on me throughout this journey. I plan to go back and finish school once my daughter’s a bit older. I figured, maybe I can’t give back to them, but I would like to give back to somebody else who is going through something. Now, I work with patients with breast cancer or cervical cancer. I’m happy I am able to be there and hold somebody else’s hand and tell them their care team is there to help them through it.

Even though I may often wake up in pain, losing clumps of my hair, when I walk into work I remember that there are people that are going through something worse than I am. I remind myself that I can do it. I have to keep doing this. I have to be there for them right now. And my daughter is counting on me too; I have to do everything that I can to feel better for her. I’ve come this far, and I know that I can keep going.

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