Lupus (SLE) and Pregnancy: Planning, Risks and Care
By Dr. Krishna Adhikari, Consultant Rheumatologist
MBBS, MD (Internal Medicine), Fellowship in Clinical Rheumatology
Most women with lupus can have healthy pregnancies if the disease is under control. Lupus does raise the risk of certain complications, and some lupus medicines are not compatible with pregnancy, so the safest approach is to plan the pregnancy with your rheumatologist rather than announce it afterwards. This article explains what that planning involves and what will be monitored.
What is lupus?
Systemic lupus erythematosus, shortened to SLE or just lupus, is a chronic autoimmune disease that can affect many parts of the body — skin, joints, heart, lungs, kidneys, circulating blood cells and brain. Symptoms vary from person to person and range from mild to severe; common ones include painful, swollen joints with morning stiffness, fever, fatigue, hair loss, mouth and nose sores, and a rash across the nose and cheeks. Lupus affects women about nine times more often than men, and most often begins between the ages of 15 and 45 — exactly the age at which many people are thinking about children.
Can you get pregnant if you have lupus?
Yes, and for most women the outlook is good. NIAMS states that most women with lupus can have healthy pregnancies if the disease is under control. That last phrase is the whole point: the condition of your lupus at the time you conceive is the single thing that most shapes how the pregnancy goes. The Lupus Foundation of America advises waiting until lupus is minimally active and symptoms are under good control on medicines that are safe to take during pregnancy.
Planning ahead: why timing matters
Talk to your doctor about your plans in advance — the Lupus Foundation of America suggests at least three to six months before you want to start trying. There are two reasons for that lead time. First, your doctors need to see that the disease is genuinely quiet rather than briefly calm. Second, you may need to change lupus medicines three to six months before trying, and those changes take time to make safely and to confirm that the disease stays controlled on the new regimen.
Contraception is part of the same conversation. Birth control choices interact with lupus — for example, oestrogen-containing pills are not recommended for women with antiphospholipid antibodies — so discuss options with your doctor rather than choosing from what a pharmacy suggests.
Medicines and pregnancy
Some medicines used to treat lupus are not compatible with pregnancy. Others are considered safe and are often continued, because uncontrolled lupus is itself a risk to a pregnancy. Which is which depends on the specific medicine, the dose, your organ involvement and your history, so this article gives no drug-by-drug guidance and you should not change anything based on it. If you are planning to get pregnant, ask your doctor which lupus treatments are safe for you. Stopping a medicine on your own — including after a positive pregnancy test — can trigger a flare at the worst possible moment.
Risks to know about
Lupus can flare during pregnancy, and pregnant women with SLE can have a higher risk of pregnancy complications such as miscarriage. The Lupus Foundation of America lists several serious complications that lupus raises the risk of:
- Blood clots.
- High blood pressure, which can lead to a serious condition called preeclampsia.
- Premature birth, when the baby is born too early.
- Miscarriage, the loss of a pregnancy before 20 weeks.
Knowing these risks is not a reason to avoid pregnancy. It is the reason the pregnancy is monitored more closely than usual, so that problems are caught while there is still time to act.
Tests and monitoring during pregnancy
Close monitoring during pregnancy is essential, and NIAMS is specific about who needs the closest attention: people with low platelets, antiphospholipid antibodies, anti-SSA/Ro antibodies, high blood pressure, lung or heart problems, or kidney disease.
Antiphospholipid antibodies
These are among the antibody abnormalities seen in lupus and are associated with blood clots. Their presence changes both contraception advice and how a pregnancy is watched.
Anti-Ro/SSA and anti-La/SSB antibodies
Your doctor will test your blood for anti-SSA/Ro and anti-SSB/La antibodies, proteins that increase the baby's risk of a heart block. Testing for them before or early in pregnancy is what allows the pregnancy to be monitored appropriately.
Kidney involvement
Lupus can affect the kidneys, and existing kidney disease is on the list of reasons for closer monitoring. Knowing your kidney status before conception rather than during a complication is a large part of why pre-pregnancy planning is recommended.
Who should be on your care team
Lupus pregnancy is shared care. A maternal-fetal medicine specialist can work with your rheumatologist and your other doctors to help you stay healthy during pregnancy. Make sure each doctor knows what the others have prescribed and what the latest results show; carrying your own file of reports is the simplest way to make that work.
When to see a rheumatologist
See a rheumatologist before you start trying to conceive if you have lupus — ideally three to six months ahead. Also seek advice if you have lupus and are already pregnant, if you have had recurrent miscarriages or a blood clot and have never been tested for antiphospholipid antibodies, if you have symptoms that could be a flare during pregnancy, or if you have unexplained joint pain and swelling with rash, fever, mouth sores or hair loss and have never been assessed for lupus. Positive antinuclear antibodies (ANA) are present in nearly all people with lupus, but ANA testing needs interpreting by a specialist — a positive result alone is not a diagnosis.
Rheumatology care in Kathmandu Valley
Rheumatology care at Tulsi Multi Speciality Clinic is provided by Dr. Krishna Adhikari, consultant rheumatologist and Lecturer in Internal Medicine at Patan Academy of Health Sciences (Patan Hospital), NMC No. 13049. He consults Sunday to Friday from 4:00 PM at AVM Chowk, Manbhawan, Lalitpur-5, Kathmandu Valley. See our rheumatology service and Dr. Adhikari's profile, book an appointment, or call +977-1-5914294. This article is general information, not a substitute for a consultation.
Sources
Rheumatology care at Tulsi Multi Speciality Clinic · Dr. Krishna Adhikari, consultant rheumatologist