Every year, many women diagnosed with lupus become pregnant and go on to have a healthy baby. Research shows lupus has no effect on a woman’s ability to become pregnant. However, lupus increases the chances of problems for both mums and their babies, and so it is advised women with lupus are classed as ‘high risk’ during pregnancy. This means that they will be closely monitored by specialist doctors to promote a good outcome.
We hope to explain how lupus can affect women in pregnancy, focusing on planning a pregnancy, care during pregnancy, safe use of medication and the common problems that sometimes occur.
Pre-Pregnancy Preparation and Counselling
I want to have a baby, do I need to discuss this with my rheumatology team?
Yes! When planning a pregnancy it is important to have early discussions with your rheumatology team, either with your consultant or specialist nurse. Some hospitals offer an appointment in a combined clinic, where you can have a discussion with a rheumatologist (specialist doctor who cares for people with rheumatological conditions such as lupus), obstetrician (specialist pregnancy doctor), specialist nurse and/or midwife at the same time. Together they will look after you before, during and after pregnancy. It is important to be as prepared as possible before getting pregnant.
What will you discuss with me at this kind of appointment?
When planning your pregnancy, we check your medication and advise which are safe to continue, and which ones would need to be stopped or swapped to alternatives that are safe for you and your baby. We have lots of experience with the medications we use both during pregnancy and after when you are breastfeeding. We will make a medication plan with you, for each step of the pregnancy and after the birth of your baby.
We will decide with how often you need to be seen and how best to monitor you and your baby during the pregnancy. We will also review all your blood tests and what types of antibodies you may have. This is important because some antibodies (called Ro & La) carry a small risk of causing heart block (a very slow heart rate) in babies. This risk can be reduced by taking hydroxychloroquine, so it may be necessary to start this treatment early.
It is important to try to plan the pregnancy at a time when you are not being affected by lupus or when it is under control. We know this is the safest time for you to become pregnant. It reduces the chances of you having a lupus flare during pregnancy and after delivery.
What other things are important to think about before planning a pregnancy?
It is also important to have good general health too. Here are some things you can do that will also help you to have a healthy pregnancy:
- Start taking folic acid supplements (400 micrograms once a day)
- If you or your partner smoke, seek help to stop
- Avoid the use of alcohol and illicit drugs
- Limit caffeine intake
- Be a healthy weight (body mass index [BMI] 18.5-24.9). Weight loss can be achieved by healthy eating and physical exercise.
After the birth of the baby there is an increased risk of a ‘lupus flare’. It is good to consider what support you and the baby might need at home in the first 6 to 8 weeks to keep both of you protected.
Supportive Care in Pregnancy
You will require regular appointments during your pregnancy to try to detect any abnormal readings as early as possible. It is important to never miss these appointments, as this can cause delays, which may make complications more difficult to treat.
What might happen at these appointments?
- Discuss how the pregnancy is going
- Chance to talk about any worries or ask questions
- Blood tests
- Urine tests
- Scans of the baby
- Making a birth plan
Risks in Pregnancy
Whilst many women with lupus have healthy pregnancies, they are at higher risk of developing complications.
Flare of Lupus
Around half of pregnant women with lupus will have a flare. Flares increase the chance of problems for the baby such as early delivery, having a small baby, miscarriage and stillbirth. Flares also increase the chance of problems for the mother such as pre-eclampsia.
If you have symptoms of a flare, you must inform your doctor immediately as it is important they are treated quickly and properly to help prevent further problems happening. Flares of lupus can be treated with steroids (eg. prednisolone).
Keeping lupus well controlled in the 6 months before getting pregnant and continuing medications which have been recommended by your team helps avoid flares in pregnancy. For this reason, it is important to have a “pre-pregnancy counselling” appointment, which is discussed in the “Pre-Pregnancy Preparation and Counselling” section.
2 in 10 pregnant women with lupus develop pre-eclampsia, compared to 1 in 10 the general pregnant population. Women with pre-eclampsia have high blood pressure and protein in their urine. Symptoms usually start after week 20 of pregnancy and can include swelling, headaches, changes in vision, shortness of breath, feeling and being sick and stomach ache.
There are other things that increase the chance of developing pre-eclampsia such as diabetes, high blood pressure before pregnancy and a family history of the condition in your mother or a sister. If you are thought to be high risk of developing pre-eclampsia, doctors will advise you to take aspirin to reduce this risk.
If you are diagnosed with pre-eclampsia, you will usually be given tablets to lower blood pressure but occasionally you may need medications given through a drip. You will need extra monitoring including blood tests and scans. The team will monitor you and baby closely until you give birth. The doctors will discuss with you when this is needed, and what kind of birth is safest.
Lupus is linked with a higher chance of developing diabetes in pregnancy (gestational diabetes), particularly if you are taking steroid medication such as prednisolone. Gestational diabetes is managed by monitoring your blood sugars, reducing the amount of carbohydrate in your diet and sometimes medication including tablets or injections (insulin). When gestational diabetes isn’t well controlled, the baby can put on additional weight inside the womb and sometimes needs an earlier birth.
Risks to Baby
Lupus and risks to baby
Most women with lupus give birth to healthy babies. Lupus has no effect on the baby’s developing organs. There is a higher chance of pregnancy complications so you may be advised to give birth at a hospital with a Neonatal Intensive Care unit in case your baby requires extra care.
There is a higher-than-average risk of preterm birth, so your baby may be born sooner than expected. Lupus is also associated with gestational diabetes and high blood pressure. If these do develop then there may be additional risks to you and your baby. However, it is important to remember that we are very experienced in looking after women with both conditions and you will receive expert help that will reduce the risks to you both.
What is Neonatal Lupus?
This is rare, but there is a higher chance of your baby having neonatal lupus if you have anti-Ro or anti-La antibodies (up to 1 in 4 or 25%).
Affected babies may present with a characteristic rash on their face and scalp from a few weeks of age which often resolves by a few months of age. A more significant complication found in these babies is a heart condition called heart block, which means the baby’s heart rate is slower than expected. This is sometimes picked up as your pregnancy progresses but may not become apparent until after birth. Signs that your baby has heart block could be fast breathing or an irregular heartbeat. When a slow heartbeat is picked up antenatally, then your doctor or midwife may ask a paediatrician to make a plan ready for when your baby is born. Your baby may need to be admitted to the neonatal or special care baby unit for assessment after birth. Here, special tests such as an ECG (heart tracing) or a scan of your baby’s heart may be done. Occasionally babies may require transfer to a children’s hospital, but this is very rare.
Medications in Pregnancy
Many medications used in women with lupus are safe to use in pregnancy. Having a pre-pregnancy appointment with your rheumatologist and an obstetrician means you can discuss the safety of the medications you currently use. If you fall pregnant without planning, rather than stopping all your medication straight away – contact your rheumatologist or GP to discuss the safest approach.
Whilst most mums feel worried about taking medication in pregnancy, it is important to remember that safe medications, which control your lupus, mean you are less likely to flare. Keeping the levels of inflammation low means your baby can thrive in a healthy environment and you can stay well.
Drugs which may be recommended in pregnancy
It is important to take folic acid 400 micrograms once a day for at least 3 months before a planned pregnancy, or to start straight away if it is unplanned. This medication can help support the development of the baby’s spinal cord and is safe for both you and baby. It should be taken until you are 12 weeks pregnant.
Your team may recommend you take a small dose of aspirin (150 mg once a day) from the 12th week of pregnancy. We know that aspirin is safe for mum and baby and reduces the risk of pre-eclampsia by 17%. It also reduces the risk of having a baby that doesn’t grow properly (small for gestational age) by 20%.
All women in pregnancy are assessed for their risk of blood clots (also called deep vein thrombosis [DVT] or pulmonary embolism [PE]). If you are thought to be at increased risk of blood clots, a blood thinner will be recommended. This is in the form of daily injections (examples include enoxaparin, dalteparin). This is safe for you and the baby. It won’t thin your blood too much (even if taken alongside aspirin, as they work in different ways). Your doctors will tell you when to stop it, either before labour or a planned Caesarean section.
Medications for Lupus
This medication is widely used in pregnancy and is known to be safe for mum and baby. It can help reduce the risk of Ro antibodies crossing the placenta. It is safe to take throughout your pregnancy and while breastfeeding.
Azathioprine, cyclosporin, sulfasalazine
These medications are used in pregnancy and are known to be safe for you and your baby. They can be safely used during breastfeeding, although breastfeeding whilst on sulfasalazine should be avoided if your baby is poorly or premature. The medical and neonatal team will be able to discuss this with you. If you are taking sulfasalazine, you should take folic acid 5 mg instead of 400 micrograms for at least 3 months before you get pregnant.
Steroids, such as prednisolone, can be used in pregnancy as part of your treatment plan and usually at a low dose. You may be given a higher dose to treat a flare. Prednisolone is safe, but it can increase your risk of developing diabetes in pregnancy (gestational diabetes) and sometimes increase your blood pressure. Your medical team will monitor you for the development of both. We will always use the lowest possible dose needed to control your lupus.
Drugs which aren’t safe to use in pregnancy
These include mycophenolate mofetil (MMF), warfarin and methotrexate. If you are on these medications, it is important you have pre-pregnancy planning advice to plan stopping these medications and possibly switch to other medications. Some of these drugs need to be stopped months before getting pregnant, so seek help early.
Cyclophosphamide is not recommended in pregnancy generally, but may be given in very rare cases. This would be decided by your team.
If you fall pregnant unexpectedly whilst on these medications, contact your rheumatologist or GP straight away to discuss how to stop these safely. They will be able to advise you on the best way forward.
Painkillers during Pregnancy
It is important to discuss any pain you are having with your rheumatologist or obstetrician. They can advise you on the best painkillers to take. Paracetamol is safe to use throughout pregnancy. Codeine can be used on a short-term basis, but it can cause constipation.
Anti-inflammatories (for example, ibuprofen, naproxen) can be used for short periods at certain times in pregnancy. We advise you talk to your doctors before taking them.
New medications and new data about the safety of medications in pregnancy is coming out all the time. It is always best to discuss your medication with your team and plan their use safely.
After having the baby, you should be seen by your rheumatologist. In this appointment, they will ask about your symptoms and discuss medications. If changes to your medications were made during pregnancy, you may need to return to the treatment plan you had before becoming pregnant. After birth there is a higher chance of lupus flares, even if the disease had been stable during pregnancy, so look out for symptoms and seek medical advice if you have any concerns.
Women with lupus can breastfeed. Breast milk contains all the nutrients your baby needs to grow and provides protection from infections by transferring some of the mother’s immunity to the baby. However, some lupus medications can pass to the baby through breastmilk, and it may not be possible for all mothers with lupus to breast feed. If you are unable to breastfeed or choose not to, you will be helped to choose a suitable infant formula feed.
When my now husband proposed to me in November 2017, we knew that once we were married, we immediately wanted to try for a baby.
In early 2018, I spoke with my rheumatology consultant about my plan to start a family. My lupus was under control and the medications I had been taking since my diagnosis (azathioprine and hydroxychloroquine) were safe to take during pregnancy. My consultant arranged for an appointment at the lupus pregnancy clinic. At this appointment, I spoke with an obstetrician and rheumatologist. They talked about the medication I was taking and how I would be under the obstetrician’s care during the pregnancy, with extra check-up appointments and scans. They also talked about risks that can be higher in pregnancies with lupus. They completely put my mind at ease.
Once I found out I was pregnant, had notified my GP and spoken to a midwife, they referred me to the obstetrician, Lucy Morse, who I previously saw in the lupus pregnancy clinic. In addition to the routine 12- and 20-week scans, I had scans at 24, 28 and 32 weeks. I also had regular check-ups with my obstetrician doctor. I was advised to take aspirin throughout my pregnancy. Unfortunately, my pregnancy was during COVID-19, so restrictions meant I had to go to appointments and scans alone. I also spent a lot of the pregnancy shielding.
My doctor came to the decision that I would be induced at 38 weeks to lower the risk of stillbirth. Sadly, we were in lockdown again and at the height of the winter outbreak. Yet, despite the limits of lockdown, I was induced and went into labour. My beautiful, healthy baby girl was born by c-section on 19th January 2021!
Overall, I felt my pregnancy went very smoothly and my lupus stayed under control during and after my pregnancy.
We would like to thank Dr Molly Padden, Dr Brittany Hillman, Dr Lucy Morse, Dr Sophie Reynolds, Dr Nicola Ruth and Sister Julie Painter for their contributions to this work.