Women's health

Hopeful moms-to-be with lupus: don’t be discouraged

Content warning: This post contains mention of pregnancy loss


Lupus primarily affects women of childbearing age. For hopeful moms-to-be with this condition, planning your pregnancy is one of the most important things you can do for yourself and your baby.

Lupus or Systemic Lupus Erythematosus (SLE) occurs when your own immune system attacks healthy parts of the body and causes inflammation and damage to tissues and organs such as the joints, kidneys, lungs, skin and heart.

“When women in their twenties and thirties are first diagnosed with lupus, it’s an important discussion to have with them – to work out plans they may have for pregnancy and whether they may have a timeline,” says Dr. Sharron Sandhu, a rheumatologist in the Holland Bone and Joint Program, who provides pre-pregnancy counseling to these patients.

Here are some questions you can discuss with your rheumatologist:

Why is it important to plan my pregnancy?

“We know that outcomes for mother and baby are best when conception coincides with good disease activity,” Dr. Sandhu says.

She describes good disease activity as having minimal symptoms, with blood test results that suggest the condition is well controlled and there is no inflammation or minimal disease activity in organs like the kidneys or lungs.

What might my plan for pregnancy involve?

“Every patient is different. If there are only mild symptoms and the disease is well controlled, it should be safe for a patient to proceed with pregnancy plans,” says Dr. Sandhu.

If disease has been moderately active, especially if there is kidney involvement, Dr. Sandhu says it is best to gain more control of the disease and to maintain that for six months or more before a patient proceeds.

“If kidney disease is severe or their lupus is very active, pregnancy would not be recommended due to the strong likelihood of adverse effects on both the mother and the baby,” she says.

How have things changed for those of us who want to try for kids?

“Young women with lupus who have goals to start a family should not feel discouraged. We’ve come a long way in rheumatology practice. We now understand more about the disease – how to treat and control it – and that has helped to improve outcomes in pregnancy,” adds Dr. Sandhu.

A study published in the Journal of Rheumatology shows that rates of early pregnancy loss for patients with lupus is significantly reduced by half at 17 to 20 per cent or 1 in 5 women, compared to rates 40 years ago. Though women with lupus in pregnancy have a higher likelihood of preterm births, data from the study also shows a trend toward a decrease in rates for these patients over the last 20 years. These reductions in rates are due to better screening and disease management and improvements in monitoring in pregnancy.

What does better screening and disease management mean?

“Better screening and management relate, in part, to greater understanding of antibodies associated with autoimmune conditions.

Generally, the body’s immune system forms antibodies to fight infections or cells it recognizes to be separate or external. With lupus, an autoimmune condition, the immune system no longer differentiates and begins to attack itself.

For diagnostic tests, your rheumatologist would have conducted an autoimmune panel including blood work to test for different antibodies,” says Dr. Sandhu.

“About 25 to 50 per cent of lupus patients carry either the anti-Ro antibody or both anti-Ro and anti-La. Early on, it is best for these women to be on Hydroxychloroquine, a disease-modifying anti-rheumatic drug. That’s because in two to five per cent of pregnant patients who carry these antibodies, there is a risk of the antibody crossing the placenta and affecting the fetal heart.

For this small number of patients, the risk is highest at the 18 to 24 weeks gestation period. The encouraging news is that if these patients remain on Hydroxychloroquine throughout their pregnancy, the risk of developing the condition is significantly reduced: by 65 per cent. As soon as a patient who carries these antibodies is pregnant, she is referred for fetal echocardiography monitoring. This monitors for a condition called congenital heart block and is done weekly from 16 to 26 weeks, and every two weeks after.

It is also important to screen for an antibody called the anti-phospholipid antibody. We know that women in the general population have a risk of early pregnancy loss and that women with lupus have a higher-than-average risk.

If the anti-phospholipid antibody is present, there is increased risk of later loss in pregnancy for women with lupus, and it’s important to understand and manage these risks ahead of time, possibly adding other medications such as aspirin. If there is a history of blood coagulation issues and later loss in pregnancy, a rheumatologist may recommend a patient be on a combination of aspirin and heparin in pregnancy,” she says. 

What medications should I be on, and when?

“Each medication is decided upon between you and your rheumatologist and based on your individual condition and how each medication relates to your pregnancy.

Pre-pregnancy counseling should also involve your rheumatologist conducting with you, a maternal risk and fetal risk assessment, and a medication review.

Keeping in mind that it is best to for a woman with lupus to try to get pregnant when the disease is most inactive:

  • medications such as Hydroxychloroquine are safe and it is recommended that patients remain on this before conception and through pregnancy. This medication helps reduce the risk of flares and of placental transfer of maternal antibodies. Azothiaprine is an immuno-suppressant that is also relatively safe to use in pregnancy.
  • medications such as Methotrexate are not safe to take if a patient is trying to get pregnant.
  • medications like non-steroidal anti-inflammatory drugs, such as Ibuprofen, should be used judiciously, in the first and second trimester. These should be avoided in the third trimester of pregnancy and should be discontinued after 32 weeks,” says Dr. Sandhu.

What else can I do to help myself, and my baby?

“Fatigue is common in pregnancy in the general population. With lupus, we know that 50 to 80 per cent of patients experience fatigue. Fatigue alone is not an indication of increased disease activity. “You’re also going to have some weight gain, but it’s best to avoid excessive weight gain. Eat healthy and do a bit of activity to give yourself a boost. Get help as much as you can,” says Dr. Sandhu. “Pace yourself and prioritize your activities. If you’ve got a list of 10 things to do, look at the top two to five things you must do today…and park the rest.”

About the author

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Natalie Chung-Sayers

Natalie Chung-Sayers is Sunnybrook's Communications Advisor for the Holland Bone and Joint Program and the St. John's Rehab Program.

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