Considering pregnancy and have lupus? Plan ahead

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Like many autoimmune disorders, lupus (systemic lupus erythematosus, or SLE) disproportionately affects women during child-bearing years. Lupus is one of more than 80 autoimmune illnesses that affect an estimated 23 million people in the US — and nearly 350 million people worldwide. If you have lupus or another autoimmune illness and you’re planning to have kids, it’s safest to think ahead.

Years ago, people with lupus or other autoimmune disorders were advised to avoid pregnancy. The thinking was that it was simply too risky for mother and fetus. That’s no longer true: in most cases, following expert guidelines now available can make a successful pregnancy possible. These guidelines explain good practices for a range of family planning issues. Below, we answer several common questions about fertility, pregnancy, birth, and breastfeeding.

How might lupus or its treatment affect my fertility?

About 90% of people with lupus are biologically female, and the disease tends to begin between the ages of 15 and 35. So, family planning is a crucial part of lupus care.

Doctors once believed that active lupus interfered with fertility so much that pregnancy was unlikely. While this myth was debunked long ago, people with lupus may take longer than expected to become pregnant. This is more likely if you have active disease requiring aggressive treatment, or if you have certain antibodies (called antiphospholipid antibodies) in your blood.

Your prenatal provider or rheumatologist may recommend that you see a maternal fetal medicine specialist experienced in taking care of pregnant people with fertility issues to fully review your situation.

For people with lupus who experience infertility, in vitro fertilization may be a good option. Because certain medicines, such as cyclophosphamide, may reduce fertility, your doctor may recommend adjusting these.

Egg freezing is another option. It can be done before starting medicine that reduces fertility, or to save younger, healthier eggs for the future in case pregnancy must be delayed for a while.

Will I need to change my treatment before pregnancy?

This depends on which medicines you take and how well controlled your illness is. Good control for at least three to six months before getting pregnant is ideal. An unplanned pregnancy can put both you and the pregnancy at risk.

If your lupus has been poorly controlled, or if it affects major organs such as the heart, lungs, or kidneys, you may be counseled to avoid pregnancy, at least for a while, or to change medicines to better control your disease.

Some medicines taken for lupus are unsafe for a developing baby, and are generally avoided during pregnancy. Examples include methotrexate, mycophenolate, and cyclophosphamide. But the health and well-being of the mother must also be considered, since changing medications could put the mother’s health at risk. With advance planning and coordination among your doctors, you can make changes to improve treatment safety.

What else should I do before trying to get pregnant?

It’s a good idea to take a prenatal vitamin and/or a folic acid supplement. Check with your doctors for specific recommendations.

If you smoke, make every effort to quit. Nicotine products have many health risks, such as an increased risk of cancer, heart attack, stroke, and lung disease. And the combination of lupus, pregnancy, and smoking can markedly increase your risk of having abnormal blood clotting. If you’ve found it difficult to quit, talk to your health care team for help. Your doctor may recommend medicines or nicotine replacement therapy to help you quit.

How might pregnancy affect my illness?

Many people with lupus don’t notice a major difference in their disease during pregnancy. However, studies suggest that flare-ups of lupus tend to be more frequent during pregnancy. High blood pressure, preterm delivery, miscarriage, and impaired fetal growth are among the most common complications of lupus pregnancies.

Your doctor will likely recommend continuing treatments for lupus that are considered safe for the developing fetus, such as hydroxychloroquine, and also taking aspirin to help prevent complications. Closely monitoring you during pregnancy is warranted, to detect and treat lupus flare-ups or any of these complications.

Will my prenatal visits be any different because of lupus?

Because people with lupus have higher than average risks for pregnancy complications, a maternal fetal medicine doctor is often recruited to be part of your medical team. The schedule of routine tests to monitor pregnancy may be modified, too. For example, the risk of diabetes during pregnancy may be higher for people with lupus, possibly due to steroid treatment. So screening for diabetes may be recommended earlier than at the usual 24 to 28 weeks of pregnancy.

If you have certain antibodies in your blood (especially ones called anti-Ro and anti-La), your doctors may recommend more frequent fetal monitoring, with particular attention paid to the developing heart.

Even if everything is progressing normally, it’s important not to skip regularly scheduled prenatal care.

Do people with lupus have more pain during pregnancy?

With or without lupus, pregnancy can be uncomfortable! Many women with lupus have arthritis pain, fibromyalgia, or other pain disorders. Daily activity can help. Yoga, walking, and swimming are all great forms of exercise before, during, and after pregnancy.

What about birth?

Fortunately, most women with lupus have a normal birth experience. If you were on blood thinners to prevent abnormal clotting during your pregnancy, your health care team may be more cautious about your risk of bleeding after birth, and will prepare for this by having medicines and blood transfusions ready. Epidural anesthesia, cesarean sections, and other options are generally available as needed for women with lupus.

What else is helpful to know?

In the weeks following a birth, some women do experience a lupus flare. Your health team will monitor you closely for this possibility.

If you hope to breastfeed, ask your care team about the medicines you take. Several medicines, including hydroxychloroquine, are safe to use during breastfeeding.

The bottom line

Most women with lupus can safely and successfully pursue pregnancy if they wish. When it comes to family planning for people with any autoimmune illness, it’s essential to choose reliable sources of information, plan ahead, communicate regularly with your health care team, and — importantly — ask lots of questions.

About the Authors

photo of Alison Shmerling, MD, MPH

Alison Shmerling, MD, MPH, Guest Contributor

Alison Shmerling, MD, MPH, is a family physician practicing full-scope family medicine, including low-risk obstetrics. She completed her medical degree and master of public health at Tufts University School of Medicine. She is now affiliated with … See Full Bio View all posts by Alison Shmerling, MD, MPH photo of Robert H. Shmerling, MD

Robert H. Shmerling, MD, Senior Faculty Editor, Harvard Health Publishing

Dr. Robert H. Shmerling is the former clinical chief of the division of rheumatology at Beth Israel Deaconess Medical Center (BIDMC), and is a current member of the corresponding faculty in medicine at Harvard Medical School. … See Full Bio View all posts by Robert H. Shmerling, MD


Talking to your doctor about your LGBTQ+ sex life

photo of a woman doctor talking with a man patient sitting by a window, view is over patient's shoulder

Editor’s note: in honor of Pride Month, we’re re-publishing a 2019 post by Dr. Cecil Webster.

Generally speaking, discussing what happens in our bedrooms outside of the bedroom can be anxiety-provoking. Let’s try to make your doctor’s office an exception. Why is this important? People in the LGBTQ+ community contend not only with a full range of health needs, but also with environments that may lead to unique mental and physical health challenges. Whether or not you have come out in general, doing so with your doctor may prove critical in managing your health. Sexual experiences, with their impact on identity, varied emotional significance, and disease risk, are a keystone for helping your doctor understand how to personalize your healthcare.

Admittedly, talking about your intimate sexual experiences or your gender identity may feel uncomfortable. Many LGBTQ+ patients worry that their clinicians may not be knowledgeable about their needs, or that they’ll to have to educate them. Finding a LGBTQ+ adept doctor, preparing ahead of time for your next appointment, and courageously asking tough questions can give you and your health the best shot.

Finding a skilled clinician who is LGBTQ+ adept

Many large cities have healthcare institutions whose mission centers on care for LGBTQ+ peoples. However, these organizations may prove inaccessible to many for a variety of reasons. Regardless of your location, asking friends, family, or others to recommend a clinician may be a game changer. If your trans friend had a relatively painless experience visiting an area gynecologist, perhaps your Pap smear may go smoothly there as well. If your coworker has a psychiatrist who regularly asks him about his Grindr use, perhaps it may be easier to navigate your gay relationship questions with her.

Word of mouth is often an undervalued method of finding someone skilled and attentive to the needs of LGBTQ+ individuals. Online, many clinicians offer a short bio with their areas of expertise, and there are provider directories featuring trusted clinicians. Further, some doctors regularly write articles and give talks that may offer clues about desired knowledge. A simple Google search of your provider may yield a bounty.

Next, give your doctor or healthcare organization a call. Don’t be shy about requesting someone whose practice matches your specific needs. Your health information is protected, and generally, physicians hold your clinical privacy dear. Keep in mind that not all clinics will know or share whether or not your doctor is, for example, also a lesbian, but they may pair you with someone well suited to your request or point you in the right direction.

Preparing for your appointment

Let’s say you are nervous about coming out to your doctor. A little preparation may ease this burden. Here are some quick tips:

  • Let them know you’re nervous at the start of the conversation.
  • Be as bold as you can tolerate.
  • Write down what you are excited about, nervous about, and/or curious about.
  • Go in with a few goals and start with what’s most important.
  • Maximize your comfort. If your partner is calming, bring them. If Beyoncé soothes what ails you, bring her along too.
  • Lightly correct or update your clinician if they get something wrong.

Ask tough questions, give clear answers

As a psychiatrist who works with kids and adults, I often hear questions like, “I don’t know really how to say this, but I started experimenting with other guys. Does this mean I’m gay?” I may start by asking if you’ve enjoyed it. My colleagues in health care might begin with the same question.

Pleasurable experiences come in all sorts of constellations, and healthy exploration is part of being human. Additionally, clinicians need to assess and address your safety. Many LGBTQ+ people are at higher risk of intimate partner violence. We may ask about your use of condoms, how many partners you’ve had recently, your use of substances during sex, and how these experiences may shift how you see yourself. Give clear answers if possible, but don’t fret if you’re uncertain. Your doctor will not likely provide a label or pry unnecessarily. They may offer constructive information on the use of condoms, reasons to consider using PrEP (which can effectively prevent HIV), and places you can go for more guidance. Physicians enjoy giving personalized information so that you may make informed healthcare decisions.

There is no end to what is on people’s minds. Be bold. Will tucking reduce my sperm count? Maybe. Does binding my breasts come with risk? Likely. Was Shangela robbed of her RuPaul’s Drag Race: All Stars 3 crown? Utterly, but let’s get back to your cholesterol, shall we?

Remember that it is often impossible to squeeze everything into one appointment. Afterward, take time to catch your breath, reflect on what you’ve learned, and come up with more questions for next time. We’re here for that.

About the Author

photo of Cecil R. Webster, Jr., MD

Cecil R. Webster, Jr., MD, Contributor

Dr. Cecil R. Webster, Jr. is a child, adolescent, and adult psychiatrist in Boston. He is a lecturer in psychiatry at McLean Hospital and Harvard Medical School, and consultant for diversity health outreach programs at the … See Full Bio View all posts by Cecil R. Webster, Jr., MD