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I am thinking of getting pregnant

Before falling pregnant, it is recommended (if possible!) that you arrange a meeting with your rheumatologist to discuss whether or not it is safe for you to become pregnant. This is advisable because the symptoms and severity of connective tissue disorders can vary widely from person to person, and so any potential risks to yourself or baby must be considered on an individual basis. Your doctor may advise you to stop taking your medication (or change medication) for a period of time before trying for a baby if this is appropriate. You may also be advised to postpone trying to get pregnant if you are currently experiencing a flare (an increase in the symptoms of your condition).
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How will my condition be managed during my pregnancy?

Your condition and pregnancy will usually be managed by an obstetrician and your rheumatologist, with whom you will meet with regularly and create a pregnancy plan. You will receive regular tests and scans to monitor your pregnancy, and may have your medication changed, as some of the drugs used to treat SLE can be harmful to your developing baby. Pregnancy can increase the likelihood of having a flare, so your condition will be carefully monitored by your rheumatologist. Should you suffer a flare, your obstetrician and rheumatologist will help you manage this in the best way to protect the health of you and your baby. Your rheumatologist will also support you following giving birth, as flares may be more likely to occur at this time.
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Are my medications safe to take during pregnancy?

  1. Painkillers
    Safe in pregnancy? Safe while breastfeeding?
    1. Non-steroidal anti-inflammatory drugs (NSAIDS) e.g. ibuprofen and aspirin.

    **NB: NSAIDs have been associated with sub fertility; best to avoid taking NSAIDs while trying to get pregnant in order to increase the chances of conception**
    NSAIDs are generally avoided throughout pregnancy due to a slightly increased associated risk of congenital heart defects. However, some women with SLE may be advised to take low-dose aspirin. Generally considered safe, although aspirin is only thought to be safe if given in small doses. NSAIDs may be associated with an increased risk of jaundice in babies.
    2. Paracetamol Generally considered safe, but may be associated with an increased risk of asthma. Considered safe.
    3. Corticosteroids, e.g. hydrocortisone, prednisolone (injections or tablets) Considered safe. Considered safe.
  2. Immunosuppressant drugs
    Safe in pregnancy? Safe while breastfeeding?
    1. Methotrexate Unsafe. Unsafe.
    2. Mycophenolate Mofetil Unsafe. Unsafe.
    3. Azathioprine Generally considered safe. Unsafe
    4. Ciclosporin Generally considered safe but careful monitoring of liver function tests are required (possible association with obstructive cholestasis) Unsafe
    5. Hydroxychloroquine Considered safe Data are limited but suggest that it is safe.
    6. Sulfasalazine Considered safe, provided that folic acid is also given. Considered safe.
    7. Tacrolimus Data is limited but suggests that it may be safe. Limited data - avoid.
    8. Sirolimus Limited data - avoid. Limited data - avoid.
    9. Anti-TNF drugs, e.g. infliximab, etanercept Limited data suggest that this is safe in early pregnancy but its use should be avoided in the third trimester. No data available
    10. Leflunomide Unsafe. It is advised that you should postpone becoming pregnant for 2 years following stopping lefunomide treatment. However, this period may be reduced to 3 months if a special "washout" treatment is received to remove remaining leflunomide from the body. Unsafe.
    11. Cyclophosphamide Unsafe. It is advised that you should postpone becoming pregnant for 3 months following stopping cyclophosphamide treatment. Unsafe. It is advised that you should wait 36 hours between stopping cyclophosphomide treatment and beginning breast-feeding.
  3. Antihypertensive drugs (to lower blood pressure)
    Safe in pregnancy? Safe while breastfeeding?
    1. ACE inhibitors (e.g. enalapril) Unsafe. Ideally these drugs should be stopped while trying to conceive. Avoid.
    2. Angiotensin II Unsafe. Avoid.
    3. Beta blockers (e.g. atenolol, labetalol) Use only if essential - may be associated with low birth weight in babies. However, labetalol is considered safe and is widely used during pregnancy. Most drugs in this category are considered safe during breastfeeding, although some are considered less safe. You should check the safety of the specific drugs with your doctor.
    4. Calcium-channel blockers (e.g. nifedipine) Considered safe. Considered safe.
    5. Diuretics (e.g. frusemide) Best avoided during pregnancy. Generally considered safe. You should check the safety of the specific drugs with your doctor.
    6. Methyldopa Safe. You may be switched from another antihypertensive medication to methyldopa. This drug is considered safe during breastfeeding, although is associated with an increased risk of postnatal depression, so should ideally be stopped after giving birth.
Disclaimer: Always seek the advice of your doctor before discontinuing or starting a course of medication.
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What are the risks to myself?

Expectant mothers with SLE may be at an increased risk of developing problems during pregnancy which can affect their own health and that of their baby. The likelihood of encountering a problem during pregnancy is highly dependent on your individual disease profile, and many mothers with SLE experience fairly normal pregnancies. Below is a quick-reference table outlining the risks associated with pregnancy in women with SLE.

SLE Clinical Features and Associated Risks Reference Table

Some of the clinical features which are associated with Connective Tissue Diseases are listed in the table below. However, this is not an exhaustive list!
Clinical Features Associated with SLE Significance
Hypertension (high blood pressure) Increases risk of pre-eclampsia/eclampsia. Requires rest and, often, medication to bring BP down. Sometimes early delivery of the baby is required.
Proteinuria (kidneys leaking protein) Increases risk of pre-eclampsia/eclampsia. If severe, proteinuria may lead to ankle swelling and increased susceptibility to infection and blood clots. Sometimes, early delivery of the baby is required.
Kidney impairment Needs careful monitoring of kidney function and blood pressure. Extra care is required when new drugs are prescribed.
Anaemia (low haemoglobin levels) You may need some iron supplements or, occasionally, a blood transfusion.
Pulmonary artery hypertension Pregnancy can cause the already raised pressure in the lung arteries to increase further. Doctors will usually advise against pregnancy in patients with pulmonary artery hypertension, since the strain on the lung arteries during 2nd/3rd trimester may put the mother’s life at risk. However, there have been a few reports of successful pregnancies in women with PAH.
Active SLE or other connective tissue disease. Drug treatment is required to control disease activity; this must be chosen carefully in order to minimise any risk to the baby.
Anti-Ro antibody Sometimes associated with transient lupus in newborn babies. In about 2% of pregnancies where the mother has anti-Ro antibodies, the baby develops a slow heart rate. Extra scans are required to screen for this during pregnancy and, occaisonally, the baby may need a pacemaker.
Anti-cardiolipin antibody Sometimes associated with an increased tendency for blood to clot; this can cause problems with placental blood supply (providing nutrients to the developing baby) as well increasing the risk of thrombosis in the woman’s veins. Extra scans are required to monitor placental blood flow and additional treatment may be started to reduce the risk of blood clots.
Lupus anticoagulant As for anti-cardiolipin antibody.
Low vitamin D levels (often low in patients with SLE, who are avoiding sunlight) Calcium/vitamin D tablets to supplement supply.
Low folic acid levels (may be low in patients with impaired absorption of nutrient through gut) Folic acid supplementation (provided for most uncomplicated pregnancies)
Abnormal thyroid function test; usually low thyroid activity. Supplementation with thyroxine.

MATERNAL RISKS: PRE-ECLAMPSIA AND FLARES

Pre-eclampsia

Pre-eclampsia is a possible complication of the second half of pregnancy, and is characterised by: Pre-eclampsia is thought to occur when the placenta does not develop properly and varies in severity from case to case. The disease is usually progressive, i.e. it generally worsens as pregnancy progresses. Pre-eclampsia can lead to eclampsia, a serious complication of pregnancy in which seizures are experienced, and can affect liver function and blood clotting. Pre-eclampsia may also reduce placental blood flow and impair the growth of the developing baby; this is known as intra-uterine growth restriction (IUGR). Although pre-eclampsia can only be cured by delivery of the baby, it can be managed with drugs which can help reduce blood pressure and prevent the disease from progressing as quickly. Expectant mothers with SLE will have their blood pressure and urine samples monitored frequently throughout pregnancy, as they are at an increased risk of developing pre-eclampsia. Pre-eclampsia occurs in approximately 1 in 5 mothers with SLE, 1 in 3 mothers with APLS and1 in 14 expectant mothers without connective tissue disease.

Symptoms

Pre-eclampsia is usually symptomless, although the following symptoms can sometimes be experienced:

Prevention

Some studies have shown that taking low-dose aspirin may reduce the risk of developing pre-eclampsia in those who are at high risk of developing the condition. However, you should always seek your doctor's advice before starting a new medication.

Management

Mothers who develop pre-eclampsia will have frequent blood pressure checks, and regular ultrasounds to check the growth of their baby. Admission to hospital for careful monitoring may be necessary. Antihypertensive medications may be given to control high blood pressure, and it may also be necessary to deliver the baby early should the condition become severe.

Flares

A 'flare' occurs when the symptoms of SLE increase. Pregnancy increases the likelihood of flares occurring; around 50-60% of women with SLE experience a flare during their pregnancy. However, only around 10% of flare cases are severe. Flares are most likely to occur in the 2nd and 3rd trimesters, and immediately after birth. Flares during pregnancy are more likely to target blood cells and the kidneys, but are less likely to target muscles, joints and the nervous system. The risk of having a flare is increased if the disease was active when the baby was conceived, or if the disease normally affects the kidneys. Having a flare during pregnancy can increase the risk of preterm delivery and the likelihood of requiring a Caesarean section, and can pose further health problems to the mother, particularly if a flare were to affect the kidneys. It is therefore highly important to contact your rheumatologist should you experience a flare.
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FETAL RISKS: INTRA-UTERINE GROWTH RESTRICTION (IUGR) AND NEONATAL LUPUS

1. IUGR: Intra-uterine growth restriction

IUGR is the failure of a developing baby to reach its growth potential while he/she is growing in the womb. As a result, babies who have been growth restricted may be born small for their gestational age. IUGR occurs when the developing baby does not receive enough nutrients required for growth, and is usually a result of the placenta not functioning effectively. IUGR affects around 8% of all pregnancies but some factors associated with SLE or APLS, such as pre-eclampsia and renal disease, can increase the risk of IUGR. The risk of a baby being growth restricted is also increased if the mother's SLE is active during pregnancy. Growth-restricted babies may be more prone to certain health problems during and after pregnancy, such as high blood pressure and osteoporosis. However, many of these health problems may be prevented with healthy lifestyle choices such as a balanced diet and regular exercise. More information about IUGR may be found here.

2. Neonatal Lupus

Neonatal lupus is a rare possible complication of pregnancy, and can occur in babies born to mothers with or without SLE. Neonatal lupus may occur in mothers who test positive for anti-Ro and/or anti-La antibodies, but this only occurs in around 1% of mothers who test positive for these antibodies. Neonatal lupus is caused by these antibodies crossing the placenta and most commonly manifest as congenital heart block (slow heart rate) or heart failure in utero, or as a rassh that develop within 3 months of birth. Congenital heart block and heart failure in utero may be diagnosed before birth by routine monitoring of the baby and treatment may begin before the baby is born. The rash is usually temporary, although it may cause some scarring. Neonatal lupus is not unique to babies born to SLE mothers, and occurs in around 1 in 20, 000 of all births.
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How will my pregnancy be monitored and what scans/tests will I require?

Your pregnancy is likely to be managed by both a rheumatologist and an obstetrician. During the first trimester of your pregnancy you will meet with them to create a pregnancy plan detailing how often you will need to visit the hospital, and which tests you may require. The severity and types of symptoms experienced by people with SLE vary widely. As such, the way in which your pregnancy will be managed shall be very individual and tailored towards your own specific needs. This section shall detail the routine tests offered to all pregnant women, and shall then discuss further tests that may be offered to expectant mothers with SLE.

Booking Visit

When you are around 12 weeks pregnant, you will attend an antenatal clinic in hospital for your booking visit. The purpose of this visit is to screen for possible complications which may arise during pregnancy. This will involve a general health check, in which the doctor or midwife will discuss your past medical history, any previous pregnancies you may have had and your general wellbeing. The doctor or midwife will also want to perform certain investigations, such as blood and urine tests. As you will be due to have your first ultrasound scan between 10-14 weeks pregnancy, you may also receive an ultrasound scan at the booking visit.

Routine Blood and Urine Tests

The purpose of blood tests taken at the booking visit and throughout pregnancy includes testing for: Urine samples will be taken to screen for infections, and for the presence of glucose and protein in the urine, which can help diagnose illnesses such as gestational diabetes and pre-eclampsia.

Rhesus Antigen and Haemolytic Disease of the Newborn

The Rhesus antigen (RhD) is a normal protein present on the surface of red blood cells of some individuals. Around 85% of the population are RhD positive. If you do not possess the Rhesus antigen (i.e. you are RhD negative), this does not pose any risks to yourself, however, if your developing baby is RhD positive it may develop a condition known as haemolytic disease of the newborn (HDN). HDN occurs when RhD positive red blood cells from the baby cross the placenta and enter the bloodstream of an RhD negative mother. As the mother has no RhD antigen present on her blood cells, her body recognises this protein as foreign and produces antibodies against it, which may cross the placenta and destroy fetal red blood cells. However, HDN is preventable if RhD negative mothers are identified and given anti-D injections, which prevent the mother's body from reacting against the RhD antigen on fetal red blood cells. More information on Rhesus antigens and HND may be found here.

Ultrasound

Ultrasound scanning is a harmless procedure which involves using sound waves to visualise your developing baby in the womb. You will be offered ultrasound scans at several times during your pregnancy, normally before 14 weeks and again at around 20 weeks.
  1. 14 week scan. The purpose of this scan is to confirm your pregnancy, to detect multiple pregnancies, to work out the date you are expected to give birth, and to check your baby for certain abnormalities which can be detected at this stage.
  2. 20 week scan. You will be offered a scan between 18-20 weeks to check that the baby is developing well, to assess the position of the placenta and to check the baby for certain abnormalities
You may be offered additional ultrasound scans depending on the findings of the 14 and 20 week scans. For example, if the placenta is found to be lying low within the womb, which can be dangerous, you may be asked to return for a further ultrasound at around 32 weeks to check to see if the placenta has moved. You may also be asked to return for further scans if the doctor or midwife feels that your baby's growth is not on target, or if there is too much or too little amniotic fluid around the baby. Further information on ultrasound scans in pregnancy can be found here, in an information sheet produced by the Rosie Hospital and in this NHS leaflet on mid-pregnancy ultrasound scans. The Royal College of Radiologists has also produced a useful website providing information about what happens during an ultrasound scan.

Further Tests Possibly Required for those with SLE

Your rheumatologist and obstetrician will probably want to meet with you frequently throughout your pregnancy to monitor your condition and the development of your baby. How often you meet with your doctors will depend on the severity of your condition and how well-controlled it is, and the progress of your pregnancy. You will be offered additional blood tests to monitor your SLE.
Blood TestSignificance
Autoantibody screen This may be for one or more of the following reasons:
  • to attempt to define the nature of your connective tissue disease more precisely
  • to screen for anti-phospholipid antibodies (which can increase the risk of thromboses or impaired placental blood supply)
  • to screen for anti-Ro antibodies, which can be associated with neonatal lupus in the baby
Lupus anticoagulant To screen for anti-phospholipid antibodies (which can increase the risk of thromboses or impaired placental blood supply)
Complement components To look for evidence of lupus activity.
You may also be offered additional ultrasound scans. The purpose of these scans will be to measure the growth of your baby, as your baby has an increased risk of growing more slowly than other babies. You may also be offered Doppler scans, another type of ultrasound scan, which measures blood flow between mother and baby. These are performed because blood flow between mother and baby is often reduced in mothers with connective tissue disorders, and this can affect fetal growth. As women with connective tissue disorders are at an increased risk of developing pre-eclampsia, your blood pressure will also be carefully monitored.
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Will I be able to have a normal delivery?

With any pregnancy it is difficult to accurately predict whether or not a mother will be able to have a normal vaginal delivery. However, having SLE does increase the chance of developing problems which require the need for a Caesarean section, such as pre-eclampsia. Your obstetrician may also wish to induce early labour under certain circumstances, for example should your kidneys become badly affected by your condition, or if your doctor suspects the baby is not growing as well as expected. However, many women with SLE manage to have normal vaginal births.
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When is it safe for me to consider getting pregnant again?

When you can consider falling pregnant again will be highly dependent on the severity and activity of your symptoms, the medications you need to take to control your condition and the progress of your previous pregnancies. It is recommended that you plan your pregnancies under the advice of your rheumatologist, as you will be advised to postpone trying for a baby until the symptoms of your condition are under control and may need to change the drugs you are taking.
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