Lupus and planning a pregnancy

Why is it important to plan my pregnancy if I have lupus?

Most women with systemic lupus erythematosus (SLE) have successful pregnancies. But being pregnant with lupus means that you may be more likely to develop complications in pregnancy than the average healthy woman. 

These complications are most likely if your condition is active or not well controlled when you get pregnant. This is why it’s important to get specialist help before you start trying to get pregnant. This is called pre-pregnancy counselling. By making sure your condition is under control before you get pregnant (and during your pregnancy), you can reduce the risk of complications.

Do not to stop taking medication before talking to a doctor or specialist. They will go through the safest options for you and baby with you, so you can make an informed decision about your care.

Because you do not know when you may get pregnant, it’s best to keep using contraception until you have seen your doctor to talk about your pregnancy plans.

What are the complications associated with having lupus in pregnancy?

Having lupus in pregnancy can increase the risk of:

• pre-eclampsia
• thrombosis
• infections
• miscarriage
• stillbirth
• fetal growth restriction (small babies)
• your baby being born with a form of lupus. 

Your condition may also ‘flare up’ (or get worse) during pregnancy. The risk is lower if your condition was inactive for 6 months before you got pregnant. Most flares can be managed with medication. 

This can all sound frightening. But if your condition is inactive and you don’t have associated antiphospholipid syndrome (APS), hypertension or kidney problems the risks are low. Most women with systemic lupus erythematosus (SLE) have successful pregnancies. 

Your healthcare team will monitor you and your baby closely throughout your pregnancy. 

Can lupus affect my ability to get pregnant?

Lupus is not thought to affect a woman’s fertility (ability to get pregnant) unless you:

• take high doses of cyclophosphamide or have done so in the past 
• have chronic kidney disease associated with lupus nephritis, resulting in serious damage to your kidneys
• you take non-steroidal anti-inflammatory drugs (NSAIDS). 

If you take NSAIDS and are having tests for infertility without any obvious cause (you’re unable to get pregnant but not sure why), you may be advised to stop taking NSAIDS and use another medication. This may help you become fertile again. 

Talk to your specialist for more information about the benefits and risks and if there are any other medications you can take instead if needed. 

When should I speak to my doctor about getting pregnant if I have lupus?

The best time for you to get pregnant is when your condition has been ‘inactive’ or well controlled for 6 months, so speak to your doctor at least 6 months before you start trying to get pregnant. This will give them time to assess your condition and review the medication you are taking. 

If your medicines need to be changed before you get pregnant, your doctor may advise you to avoid getting pregnant for 3-6 months after this change. This is to make sure that your condition remains well controlled on the new medications before you get pregnant.

“Thinking about trying to conceive with lupus felt daunting and I worried about the extra complications I might face. Pregnancy for me has been surprisingly easy, uncomplicated and lots of my lupus symptoms have greatly improved! The extra appointments and scans provided are very reassuring and you get to see your baby more than other ladies, which is very special! For once I feel as though my body is doing something right, growing my baby and I’m so grateful for that.”

Caroline 

How do I get help?

Speak to your GP or lupus specialist about how to access pre-conception care. 

The Lupus in Pregnancy (LIPS) Clinic

The Lupus in Pregnancy (LIPS) Clinic is part of the Tommy's Research Centre at St Mary's Hospital in Manchester. This specialist antenatal clinic is for pregnant women with Lupus Spectrum disorders and connective tissue disorders.
The specialist team in the clinic provides pre-conception advice. Find out more about how to be referred. 

What will the pre-pregnancy counselling involve?

Your doctors will assess your condition and screen for risk factors, such as heart, lung and kidney problems. They will also check your blood pressure. 

They’ll also do some blood tests to check for the presence of anti‐Ro and anti-La antibodies. These antibodies are associated with neonatal lupus. Neonatal lupus is a rare condition that is not the same as lupus in adults. In most babies, neonatal lupus goes away and does not come back  but in rare cases (1-2%) babies may develop a heart condition known as congenital heart block.

If your doctors believe your baby may be at risk, you’ll be offered a fetal echocardiography or monitoring of the baby’s heart rate more regularly than usual during your pregnancy. A fetal echocardiography test is an ultrasound scan of baby’s heart and allows your doctors to better assess your unborn baby’s heart health.  

Congenital heart block can be difficult to treat. If it develops, you may be offered a caesarean section. 

Your lupus medication 

Your doctors will also look at what medications you are currently taking. Some medications may not be suitable to take during pregnancy, so you may be advised to stop taking some or change what you are taking.

Do not stop taking any medication for your condition before you speak to your doctor because this may affect your condition.

Antiphospholipid syndrome (APS)

Your doctor will also do a blood test to check for antiphospholipid antibodies (APS) antibodies. APS, also known as Hughes syndrome, is an auto-immune condition that can develop alongside lupus. About 30% of women with systemic lupus erythematosus (SLE) have APS. 

If you have lupus and APS, you are more likely to develop blood clots (thrombosis). APS is also associated with:

•    recurrent miscarriage
•    fetal growth restriction (a small baby)
•    premature birth
•    miscarriage
•    stillbirth.  

This sounds scary but try to remember that APS is treatable. It is also one of the most treatable cause of recurrent miscarriage. You’ll be asked to take daily doses of aspirin or heparin, or a combination of both. These medications make your blood less likely to clot and are safe to take in pregnancy.  

What can I do to try and have a healthy pregnancy as possible?

There are lots of positive things you can do now before you try for a baby that will affect your fertility and the health of your baby.

Your health before pregnancy will affect the lifelong health of your baby. By doing some simple things, such as stopping smoking, cutting down on caffeine and taking folic acid, you can:

• improve your fertility
• protect your baby’s future health
• bring down your risk of problems in pregnancy.

Find out more about what to do before you start trying for a baby.

Once you start trying for a baby (have stopped contraception), you won't know you're pregnant for the first few weeks. So, if you're trying for a baby, making these changes sooner rather than later will give you peace of mind when you get pregnant.

Will I get extra care during pregnancy because I have lupus?

If you have lupus, you will be classed as having a high-risk pregnancy. This means that you will have extra care, including more scans than other pregnant women. 

What care you have during your pregnancy will likely depend on how your condition affects you. Essentially, the more active your condition, the more closely monitored you and your baby will be. 

If your condition is stable, you will probably be seen by specialists every month as well as have your routine antenatal care. These appointments will be used to check your blood pressure, kidney health and your baby’s growth pattern. 

You may need to be seen more often if:

• your condition is active
• you have lupus 
• the doctors have found anti-ro, anti-la or APS antibodies – if they have, your baby’s heart rate will be monitored regularly. 

If your doctors believe your baby is at risk of fetal growth restriction (IUGR) or pre-eclampsia, you will also need to see your doctors more often. 

After your baby is born

“Having lupus can be a challenge at the best of times, let alone without a small human to look after too! I felt great during pregnancy (apart from the worry!) but did need a lot of support once my son was born, especially during ‘bad days’ and flares.”

Helga

You will probably be monitored and treated for any pregnancy-induced hypertension for a while after you give birth. You’ll also be assessed for given treatment if required to prevent blood clots (thrombosis) and kidney problems. 

Your risk of your condition flaring up increases after you have a baby. So, you will need to be aware of how you feel and tell your doctor if you have any symptoms. 

Find out more about after your baby is born.

More support and information

Lupus UK is the national registered charity supporting people with lupus. It also provides a free booklet called Lupus: A Guide to Pregnancy, which you can download from their website.