The aim of this leaflet
This leaflet has been written to help you understand more about Lupus Erythematosus during pregnancy and lactation. It will tell you what it is, what causes it, what can be done about it, and where you can find out more about it.
What is Lupus Erythematosus?
Lupus Erythematosus is a group of autoimmune diseases which means that it is caused by the own immune system attacking the own body. These commonly run in families, other autoimmune diseases include diabetes, thyroid, rheumatoid arthritis and pernicious anaemia. As you most likely know, there are different forms of Lupus Erythematosus. Some of them only involve the skin; other forms may affect internal organs (systemic Lupus Erythematosus). Lupus Erythematosus may get better or worse during pregnancy. When you read this leaflet you are probably pregnant; however, if not and you think about getting pregnant, inform your doctor: careful check-ups before getting pregnant and monitoring during pregnancy are important.
Lupus Erythematosus (LE) is usually divided into three major categories:
- Discoid LE or chronic LE - only involving the skin with scaly patches usually in sun exposed areas
- Sub-acute LE - ring-shaped, red patches in sun exposed areas
- Systemic LE - butterfly-shaped redness on the cheeks, on sun exposed areas of the trunk and arms, and may also involve the joints, blood, lung, kidney, heart and other organs.
There are some other very rare forms of LE with different clinical features.
What causes Lupus Erythematosus?
Lupus occurs as a result of genetic predisposition, immune system abnormalities and certain triggers such as sunlight, smoking or certain infections. You should try to avoid exacerbating factors such as sunlight exposure and smoking.
Is Lupus hereditary?
There is evidence that some forms of Lupus Erythematosus are genetically different disorders. Susceptibility to Lupus Erythematosus can be inherited, but not even monozygotic twins will necessarily get the disease. This is due to the different immune system in each person (including each monozygotic twin), and the different provoking factors such as smoking. Relatives of an Lupus Erythematosus patient should avoid smoking to prevent disease.
What are the symptoms of systemic Lupus Erythematosus during pregnancy?
The risk of active Lupus Erythematosus during pregnancy is increased if you have had active systemic Lupus Erythematosus in the previous 6 months, and if your medication was stopped or reduced just before or during pregnancy. In most studies of pregnant women, skin, joint and/or haematological manifestations are most commonly reported, but usually, the organs involved will be similar to those previously affected. Joint pains, skin rashes, fatigue, hair loss and headaches are common in addition to the symptoms you may have felt previously. The risk of skin manifestation in pregnancy ranges from 25% to 90%. Lupus can flare at any time during pregnancy, as well as in the several months following delivery.
Many common signs and symptoms of pregnancy can easily be mistaken for signs of active systemic Lupus Erythematosus. Symptoms such as severe fatigue, hair loss, joint pain, facial redness, and headaches frequently occur during a normal pregnancy, or may be induced by treatments for other disease.
How is the diagnosis made?
Diagnosis is based on the clinical appearance, skin biopsy findings and blood tests.
Is there any risk of lupus for the new-born?
Most babies will be healthy. However, very rarely, heart disease can develop in babies whose mothers have anti-SSA (Ro) and/or SSB (La) antibodies. If this is the case, then your baby may require regular special ultrasound scans during the second half of the pregnancy. In addition, your baby may develop a transient harmless rash after sun exposure in the first few weeks of life. This rash usually disappears spontaneously within 6 months. Some of the therapeutic drugs used to treat lupus may severely damage an unborn baby; therefore, it is very important to inform your doctor when you are planning a pregnancy and immediately after getting pregnant, so that these drugs can be avoided.
How should Lupus Erythematosus be treated during pregnancy?
Your Lupus treatment may need to be adjusted before you plan a pregnancy. This is known as pre-pregnancy counselling, and is a good idea if you have active Lupus and are planning a pregnancy in the near future. The aim of lupus treatment before/during pregnancy and lactation is to prevent or reduce active disease in both you and your baby and reduce any potential harm. There needs to be a careful balance between controlling your disease and reducing harm to you and your baby during pregnancy. This decision regarding treatment during your pregnancy and while breastfeeding should be based on a mutual agreement between your rheumatologist, gynecologist/obstetrician, dermatologist, yourself and your partner.
Generally, the types of medications used to treat Lupus Erythematosus in pregnancy are the nonsteroidal anti-inflammatory drugs, corticosteroids, and immunosuppressive agents. For example, the rash in Lupus Erythematosus may be treated with low dose prednisolone (up to 10 mg/day) and/or hydroxychloroquine.
All pregnant women are recommended to take a prenatal multivitamin with at least 400 mg of folic acid each day. Folic acid is known to reduce the risk of the baby developing an abnormality in the spinal cord (neural tube defects). This is particularly important if you have been taking methotrexate prior to your pregnancy, as a deficiency of folic acid can cause neural tube defects in your baby.
Drugs that can be used to treat LE in pregnancy:
- hydroxychloroquine, chloroquine, sulfasalazine, azathioprine, cyclosporine, tacrolimus
Drugs with teratogenic effects (can cause foetal abnormalities) and should be withdrawn before pregnancy:
- methotrexate, mycophenolate mofetil, and cyclophosphamide
Drugs which can be considered in pregnancy if needed to control active disease symptoms:
- steroid tablets (low doses); nonsteroidal anti-inflammatory drugs such as ibuprofen, acetylsalicylic acid, diclofenac, etc. should be restricted to the first and second trimesters; paracetamol may be used throughout pregnancy
Drugs which should be considered only in severe, refractory maternal disease during pregnancy:
- methylprednisolone in high doses, intravenous immunoglobulin
Drugs with insufficient documentation concerning use in pregnancy:
- leflunomide, selective COX-2 inhibitors, belimumab.
What can I take during breast feeding?
Drugs compatible with breast feeding:
- hydroxychloroquine, chloroquine, sulfasalazine, azathioprine, cyclosporine, tacrolimus, prednisolone, immunoglobulins. Nonsteroidal anti-inflammatory drugs (such as ibuprofen, paracetamol, acetylsalicylic acid, diclofenac, etc.) including also the selective COX-2 inhibitor celecoxib are compatible only in certain doses and for short time periods.
Maternal milk contains only 5–20% of the prednisolone dose administered to the mother, and this concentration has only negligible effects on the infant. If the prednisone dose exceeds 20 mg, breastfeeding should be delayed at least 4 hours after the intake of the drug.
Drugs which should be avoided (limited data on breast feeding):
- methotrexate, mycophenolate mofetil, cyclophosphamide, leflunomide, COX-2 selective NSAIDs, except celecoxib, belimumab.
Where can I find more information about lupus during pregnancy and lactation?
- Götestam Skorpen C, Hoeltzenbein M, Tincani A, et al. The EULAR points to consider for use of antirheumatic drugs before pregnancy, and during pregnancy and lactation. Ann Rheum Dis 2016; 75: 795-810.
- Balanescu A, Donisan T, Balanescu D. An ever-challenging relationship: lupus and pregnancy. Reumatologia 2017; 55, 1: 29-37.
- E. Borella, A. Lojacono, M. Gatto et al., “Predictors of maternal and fetal complications in SLE patients: a prospective study,” Immunologic Research, vol. 60, no. 2-3, pp. 170–176, 2014
- Murase JE, Heller MM, Butler DC, et al. Safety of dermatological medications in pregnancy and lactation. Part I. Pregnancy. J Am Acad Dermatol 2014; 70: 401.e1-14.
- Butler DC, Heller MM, Murase JE. Safety of dermatological medications in pregnancy and lactation. Part II. Lactation. J Am Acad Dermatol 2014; 70: 417.e1-10.
While every effort has been made to ensure that the information given in this leaflet is accurate, your own doctor will be able to advice in greater detail.
This leaflet has been prepared by the EADV Task Force “Skin Diseases in Pregnancy”, it does not necessarily reflect the official opinion of the EADV.
Publication date: June 2018
Produced by the EADV Task Force “Skin Diseases in Pregnancy”