Lupus in pregnancy: planning, risks and antenatal care

Systemic lupus erythematosus is an autoimmune condition in which the immune system attacks the body's own tissues, causing joint pain, rashes, tiredness and sometimes kidney, blood or nervous system problems. The NHS describes it as a long-term condition with flares and quieter periods, and it is more common in women.

The two influence each other in a way that matters clinically. Active lupus around the time of conception and during pregnancy is associated with more problems than quiet lupus, and pregnancy itself can occasionally provoke a flare. That is why the goal is usually to get the disease settled first rather than to avoid pregnancy altogether.

Tommy's lists pre-eclampsia, premature birth, miscarriage and stillbirth, slower baby growth, blood clots, infections and neonatal lupus among the risks. The NHS pre-eclampsia page also names lupus as a factor that raises the chance of pre-eclampsia, which is one reason a low-dose aspirin plan is often discussed with the maternity team.

These are increased chances, not certainties. Women whose lupus is quiet, whose kidneys are working normally and whose blood pressure is controlled tend to do better, and many have an uneventful pregnancy.

A pre-pregnancy appointment with the rheumatology team is the single most useful step. They will look at how active the lupus has been, check kidney function, blood pressure and blood counts, and test for antiphospholipid antibodies and anti-Ro/anti-La antibodies if this has not already been done.

The NHS lupus page advises speaking to a doctor before trying for a baby so that risks and any medicine changes can be talked through. Contraception is generally continued until that review is done and the disease is settled.

• Ask which of your current medicines are acceptable in pregnancy and which should be swapped before you stop contraception.

• Ask whether you need aspirin, heparin or both, and from what point in pregnancy.

• Check that your blood pressure and kidney tests are recent.

• Ask how a flare would be managed during pregnancy and who to call.

The NHS lists hydroxychloroquine, anti-inflammatory medicines, steroids, immunosuppressants and biological treatments among the options for lupus. Their safety in pregnancy differs. Some are commonly continued because stopping them risks a flare, while a few immunosuppressants are not suitable and are replaced before conception.

The NHS advice on medicines in pregnancy is that you should not stop prescribed treatment without approval, because untreated illness can harm both of you. The BUMPS service and the UK Teratology Information Service are the reference points clinicians use when a medicine is unfamiliar. Your rheumatologist should give you a written plan rather than leaving you to decide.

Antiphospholipid antibodies make the blood more likely to clot and can damage placental function. Tommy's says daily aspirin or heparin treats the condition well. Our guide to antiphospholipid syndrome covers the condition in more detail.

Anti-Ro and anti-La antibodies are different. They are mostly harmless to the baby, but when they cross the placenta they can interfere with the electrical pathway of the baby's heart. Where they are present, the fetal heart rate is monitored so that heart block can be picked up. After birth, a transient rash in the newborn, sometimes called neonatal lupus, can occur and usually settles.

Expect more frequent appointments with blood pressure and urine checks, blood tests, and extra growth scans. A rise in blood pressure, new protein in the urine, or a drop in platelet count needs prompt attention because it may signal pre-eclampsia or a lupus flare, and the two can look alike.

Timing and mode of birth are individual decisions, shaped by how the baby is growing, how the mother is and whether complications develop. After delivery, the postnatal period is a recognised time for flares, so rheumatology follow-up and a review of medicines compatible with breastfeeding should be arranged before you leave hospital.

Contact NHS 111 or your maternity unit straight away for severe headache, visual disturbance, pain under the ribs, sudden swelling of the face or hands, reduced baby movements, a calf that is swollen and painful, or chest pain and breathlessness. Call 999 if breathlessness or chest pain is severe.