Many lupus patients can have a successful pregnancy. To increase your chance of a successful pregnancy, it is essential to seek advice regarding the right time to conceive and to educate yourself about ways in which you can optimize the pregnancy outcomes.
Lupus patients are more likely to develop pregnancy complications compared to the general population. Thus, it is important to consult your rheumatologist and an obstetrician (experienced in managing high-risk pregnancies) about pregnancy, delivery, lactation (including medications) and assisted reproductive techniques prior to becoming pregnant. Because risk for pregnancy-related problems in lupus patients depends on disease activity, damage and medications, an assessment prior to pregnancy is critical for pregnancy management, therapy, and outcomes. Additionally, you should plan your delivery at a hospital that has a Neonatal Intensive Care Unit as well as other advanced facilities to provide the specialized care that you and your baby may require.
Apart from the medical aspects, it is also important that you discuss your pregnancy plans with your partner or close family members. Pregnancy and a newborn often demand changes in your personal and professional life; seeking timely support from family and friends makes it easier to cope with these changes.
The right time to conceive is when the lupus disease activity is fully under control and you are in your best health. The healthier you are before your pregnancy, the greater are your chances of having a healthy pregnancy and a healthy baby. It is strongly recommended that you avoid pregnancy until at least six months after the lupus disease activity, especially kidney disease, has been completely brought under control. Pregnancy places an added burden on your kidneys and active kidney disease can even lead to pregnancy loss. Because active lupus affects both the mother and pregnancy outcomes, monitoring lupus activity at least once every three months is usually recommended.
After your pregnancy test is positive, you should visit your rheumatologist and obstetrician at your soonest possible convenience. The purpose of these visits is to assess the state of your health and lupus disease activity (with the goal of starting pregnancy with no-to-low activity disease) by means of a complete physical examination and blood tests. Blood tests include pre-pregnancy or early pregnancy laboratory testing for relevant autoantibodies to improve counseling regarding pregnancy.
Pregnancy may worsen already abnormal heart or kidney function and may increase risk of blood clots. Although the risk of a lupus flare is not increased in pregnant women when compared to non-pregnant women, lupus flares can occur during pregnancy or immediately following delivery. Fortunately most of these flares are not life threatening to the mother or the baby and can be treated with steroids.
Women who conceive at least six months after the lupus disease activity has been brought under control are less likely to experience a lupus flare than those who conceive while their lupus is active.
Recognizing disease flares in pregnant lupus patients can be challenging, since many bodily functions change during pregnancy, and may overlap with features of active disease, making differentiation difficult. Most patients flaring during pregnancy report fatigue, body aches, fever, butterfly shaped redness across the nose and cheeks, or patchy hair loss. Joint pain and joint swelling are also commonly reported. In case of heart or lung involvement, patients report symptoms such as chest pain or breathing problems.
At times, common discomforts of pregnancy can mimic the symptoms of lupus flare. These include:
Nevertheless, if you experience any of the symptoms mentioned above, you should immediately report them to your physician. Lupus flares detected early are easier to treat and in turn cause less harm to the mother and the baby.
Lupus patients are at a higher risk for pre-eclampsia (increased blood pressure occurring after 20 weeks of pregnancy in a previously normal woman), HELLP syndrome (Hemolysis, Elevated Liver Enzymes, Low Platelets), hypertension, renal insufficiency, blood clots, preterm delivery, abnormal blood counts, urinary tract infections, and diabetes. Diabetes and hypertension occur more commonly in women taking steroids during pregnancy. Blurry vision, headaches, abdominal pain, and decreased frequency of urination could indicate a rise in your blood pressure.
Pregnancy loss (or miscarriages) may occur in approximately one-fifth of lupus pregnancies. They are more likely to occur in women with high blood pressure, active lupus disease, active kidney disease, or antiphospholipid antibodies (aPL). Antiphospholipid syndrome (APS) is an autoimmune disorder caused by aPL attacking vascular structures in the body. As a result, this disorder leads to an increased tendency to form abnormal blood clots in the veins and arteries of the legs, lungs, or placenta. For this reason, it is important for lupus patients to be screened for aPL (especially those women who have experienced a miscarriage previously). Women with a history of miscarriage(s) and antiphospholipid antibodies are commonly prescribed aspirin and a blood thinner (heparin) to prevent recurrence.
Finally, lupus patients are at a higher risk for delivering before completing 37 weeks of pregnancy (preterm delivery) and about one-third of lupus mothers deliver preterm. Preterm deliveries are more likely to occur in patients with pre-eclampsia, aPL, and active disease. Lupus patients should be watchful for symptoms of premature labor which include backache, pelvic pressure, blood or clear fluid leaking from the vagina, abdominal cramps, and contractions occurring every 10 minutes before 37 completed weeks of pregnancy.
Most lupus patients give birth to healthy babies. Babies born to lupus patients have no greater chance of birth defects or mental retardation than those born to women without lupus.
Among lupus patients with anti-Ro/SSA or anti-La/SSB antibodies, the risk that the baby will have neonatal lupus erythematosus is 25%. Neonatal lupus consists of a temporary red, raised rash (usually around the eyes and scalp) and abnormal blood counts; the disease usually disappears by 6 to 8 months of age and does not recur.
Among lupus patients with anti-Ro/SSA or anti-La/SSB antibodies, the risk that the baby will have congenital heart block is less than 3%. Thus, if you carry these antibodies, your obstetrician will regularly check the baby's heartbeat starting at around your 16th - 18th weeks and continuing through 26th week of pregnancy. Depending on of the type of heart disease your baby has, your doctor may prescribe steroids to you in order to improve the outcome for your baby.
Babies of lupus patients are also prone to intrauterine growth retardation (IUGR) and low birth weight. This is more likely to occur in pregnancies where the mother is either taking steroids or suffering from pre-eclampsia, hypertension, or active disease. Therefore, it is important to undergo regular ultrasound monitoring to detect IUGR in time and manage it appropriately.
If possible, it is best to avoid taking any medication during pregnancy (except for pre-natal vitamins). Some medications are safe during pregnancy while others are not. At times, your doctor may substitute safe medications for the unsafe ones if you are required to continue your treatment during pregnancy. It is unwise to discontinue medications on your own because doing so may lead to worsening of your lupus and cause damage to your baby. Selected medications are discussed below but you should always review your medication list with your physician during the pregnancy planning phase.
Decision regarding the method of delivery is usually made taking into account the health of the mother and the baby at the time of labor. If the mother and the baby are healthy at the time of labor, many lupus patients are able to have a successful vaginal delivery. However, if the mother/baby is under stress, or in the event of preterm labor, a caesarian section might be the safest and the fastest method of delivery.
Women taking steroids usually require an increased dose (also known as a stress dose) during labor. The increased dose of steroids helps the body cope with the additional physical stress your body experiences during labor. Routine administration of stress-dose glucocorticoids at the time of vaginal delivery is not recommended, however it may be recommended for surgical (cesarean) delivery.
After the delivery, it is essential to follow up regularly with your doctor for the monitoring of the normal changes in your body as it transitions to its pre-pregnant state.
Lupus patients might be vulnerable to disease flare postpartum. Lupus flares following delivery are treated similarly to those in a non-pregnant patient. However, if you are breast feeding you may have to stop doing so, depending on the type and the dosage of medications you require for your treatment.
Make sure you discuss the options for birth control with your doctor. Please remember that breastfeeding is not a reliable method of birth control.
Since lupus patients might face complications following delivery, it is important to arrange in advance for someone who will provide proper care to your baby (e.g., your spouse or your parents) while you are undergoing treatment.
Yes, most women with lupus are able to breastfeed their babies. The American Academy of Pediatrics recommends that infants be exclusively breastfed for six months and continued breastfeeding until one year. Be patient, as it often takes time for the mother and baby to learn how to breastfeed. Do not hesitate to seek help from your doctor or nurse if you face trouble while breastfeeding. Nonetheless, lupus mothers may face the following challenges with regard to breastfeeding:
Belce Erton, MD
Research Volunteer and Assistant, Hospital for Special Surgery
Aeshita Pearl Dwivedi, MD
(Previous) Research Volunteer, Hospital for Special Surgery