I have lupus. What do I need to know before I get pregnant?

I have lupus. What do I need to know before I get pregnant?

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Is it safe for me to have a baby if I have lupus?

With the right care and planning, many women with systemic lupus erythematosus (SLE) can have a safe pregnancy and healthy baby. You have the best chance of a healthy pregnancy when lupus has been under control for at least six months before conception.

Good control of lupus means having normal blood pressure and kidney function, as well as not having a sudden worsening of symptoms, known as a flare. A flare can include a rash, joint pain, unexplained fever, and fluid around the heart or lungs.

Many doctors used to consider pregnancy too dangerous for any woman with lupus, and women were often discouraged from having children because there was a chance that pregnancy could make lupus symptoms worse and increase the risk of complications.

Pregnancy is still considered high-risk for women with lupus, and although this doesn't necessarily mean you'll definitely have problems, you can expect your healthcare provider to monitor you more frequently during pregnancy. You may also be referred to a maternal-fetal medicine specialist, a provider who specializes in high-risk pregnancies.

What are the risks of having lupus during pregnancy?

It's important to know the risks of pregnancy if you have lupus. The most common pregnancy complications for women with lupus are:

  • Preeclampsia
  • Premature birth
  • Intrauterine growth restriction (IUGR)
  • Miscarriage

What is the risk of having a lupus flare during pregnancy?

In addition to the possible impact of lupus on your pregnancy, there's also a risk that pregnancy could cause your lupus to flare and make symptoms worse. Studies estimating the likelihood of a flare during pregnancy vary widely: They range from about 7 percent for women with good control of their condition to nearly 70 percent for women with very active lupus.

You're more likely to experience a flare if:

  • Lupus is active when you conceive.
  • Lupus affects your kidneys (lupus nephritis).
  • You stop taking the medication used to treat lupus.

Should I see my healthcare provider before I get pregnant?

Yes. Besides finding out whether you have active lupus, your provider will do tests to determine your individual risk of complications during pregnancy. These tests may include:

Major organ function tests. Lupus affects all major organs, so your rheumatologist will check on the health of your kidneys, liver, heart, and lungs. Your kidneys are a particular concern because having lupus nephritis increases the likelihood of developing problems during pregnancy. Pregnancy alone can reduce kidney function, so having lupus compounds the stress on your body.

Antibody tests. These tests check for different types of antibodies that cause complications during pregnancy. For example:

  • Antiphospholipid antibodies can cause a blood-clotting disorder and may increase the risk of losing a baby during pregnancy, developing preeclampsia, and having other complications.
  • Anti-Sjögren's-syndrome-related antigen A (anti-SSA) and anti-Sjögren's-syndrome-related antigen B (anti-SSB) antibodies put a baby at risk for developing an abnormally slow heart rate (congenital heart block) and neonatal lupus.

Thyroid function tests. It's common for people with lupus to have thyroid disease as well. Having both thyroid disease and lupus increases the risk of preterm birth.

Your provider will ask whether you developed complications during previous pregnancies, and she'll also want to know if you previously developed preeclampsia or HELLP syndrome because the risk of having these again is high.

Also, your provider will review the medications you're currently taking and make sure you're on the safest drugs to control your lupus. It's natural to worry that taking medication could affect your baby, but not taking it could lead to a serious flare, which is bad for both of you.

When is it not a good idea to get pregnant with lupus?

Recent advances in medical research and care don't necessarily mean it's safe for all women with lupus to get pregnant. If your lupus is active, your provider will probably suggest waiting to get pregnant. Other reasons to avoid pregnancy include conditions that result from severe or advanced lupus, such as:

  • Kidney failure
  • High blood pressure in the lungs (pulmonary hypertension)
  • Restrictive lung disease
  • Heart failure
  • Preeclampsia or HELLP syndrome very early in a past pregnancy

Also, some lupus drugs are known to be risky during pregnancy. For example, cyclophosphamide (Cytoxan) isn't recommended during pregnancy because it can cause birth defects. (Cyclophosphamide is used to treat severe lupus flares, so if you're taking this drug, it's probably not a good time to get pregnant anyway.)

If it's recommended that you not get pregnant, you'll most likely need plenty of support and possibly counseling. Feelings of sadness, stress, and grief are all normal reactions, so reach out to your provider for help. Ask for a referral to a mental health professional if you're struggling to cope with your emotions.

Does lupus affect fertility?

It could. If your lupus is mild and controlled, it's unlikely to affect your fertility. But if you're having a hard time conceiving, it's possible there's a link between your lupus and your inability to get pregnant.

Almost half of women with lupus have irregular periods, especially when the condition is active. In women with kidney damage from lupus nephritis, hormones may be responsible for fertility problems.

This type of autoimmune disease targets the kidneys and may also disrupt the balance of hormones necessary for ovulation. If the kidneys aren't working well, periods can become irregular and stop ovulation.

Also, certain medications, such as nonsteroidal anti-inflammatories (NSAIDs) or a high dose of corticosteroids, are linked to fertility problems. If you're concerned, talk to your provider to see if you can switch to an alternative medication.

The antiphospholipid (aPL) antibodies you're tested for at your preconception visit could point to a problem with fertility. Between one-quarter and one-half of pregnant women with lupus have aPL, and a fraction of them develop a condition called antiphospholipid syndrome (APS). In this autoimmune disorder, the immune system creates antibodies that can lead to blood clots and other pregnancy complications.

APS can also make it harder to become pregnant by interfering with fertilization and implantation of an egg as well as increasing the risk of miscarriage or stillbirth.

And not only the medical aspects of having lupus can affect your fertility. Lupus can make you feel very tired or put you at risk of depression, meaning you're far less likely to be interested in having sex.

There are no easy solutions, but learning all you can means you can make informed decisions. It may help to talk to your healthcare provider about your options and connect with other pregnant women who have lupus in the our site Community.

Visit the Society for Maternal-Fetal Medicine's website for more information and to find an MFM specialist near you.

Watch the video: The Expert Series: Season 2, Episode 9 (October 2022).

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