If you have a rheumatic disease and want to become pregnant, you should plan your pregnancy while the disease is in a quiet phase. Your doctor should always assess the risk a pregnancy has for you, based on the type of rheumatic disease you have and how severe your symptoms are.
Are rheumatic diseases hereditary?
We still don’t know exactly why some people develop a rheumatic disease. Rheumatic diseases are caused by a complex interaction between:
- Many different genes inherited from both parents, and
- Several different environmental factors.
If one of the parents has a rheumatic disease, there is an increased risk that the child may develop a rheumatic disease. How great this risk is varies from one rheumatic disease to another. It is not possible to determine how great your personal risk is.
Concerns about heredity should not put you off having children. You can raise any concerns you may be having about heredity with your specialist.
Arthritis and pregnancy
If you have low disease activity when you become pregnant, there is a good chance of low disease activity during your pregnancy.
Severe pregnancy complications are rare in women with arthritis. There is also no increased risk of birth defects. We do know, however, that there is a link between persistent active disease and the risk of the baby being born smaller than average and slightly pre-term.
If you’ve taken a break from your regular medication during pregnancy, it may be important to start taking it again soon after having your baby to prevent a disease flare. Many of the medicines used to treat rheumatic disease, including most biological medicines, can be taken by breastfeeding mothers.
Although fewer women have a disease flare after childbirth than in the past, the strain of the disease may still feel worse in the baby-to-toddler phase. For the best possible treatment of the disease, a follow-up appointment with a rheumatologist is recommended in the first 12 months after your baby was born.
It is important to start using reliable contraception after pregnancy.
Sjögren’s syndrome and pregnancy
Sjögren’s syndrome is an autoimmune connective tissue disease that causes dryness of mucous membranes in the nose, mouth, eyes and vagina. In a small number of women, Sjögren’s syndrome progresses to lupus, which affects internal organs, making it especially important to get and follow medical advice when planning a pregnancy. The disease activity should be as low as possible for at least six months before pregnancy – this is the best starting point for low disease activity and as few complications as possible during pregnancy.
You and your doctor should make a plan for which medicines you can take while you are pregnant. It is important that you do not stop taking the medicines that keep the disease in check during pregnancy.
Most people with Sjögren’s syndrome experience stability in their condition when they are pregnant.
A small proportion (1-3%) of foetuses in mothers who are test-positive for anti-SSA and/or anti-SSB antibodies may develop congenital heart block (CHB). In the presence of maternal anti-SSA and/or anti-SSB antibodies, the foetal heart rate should be checked weekly at weeks 16-24 by your GP or midwife. In those rare cases where the mother has a persistently high degree of active inflammation, there is also a slightly increased risk of reduced foetal growth, premature birth and pre-eclampsia/eclampsia.
Newborns of mothers who are test-positive for anti-SSA and/or anti-SSB antibodies should, as a precaution, have an ECG before leaving the maternity ward. In the presence of maternal anti-SSA and/or anti-SSB antibodies, the baby may in the first few months develop a rash and/or transient (temporary) changes in blood values. This condition usually goes away on its own by the time the infant is 12 months old. In the rare cases where the infant needs treatment, this will be managed by a paediatrician. There is no need to take routine control blood samples of babies whose mothers are test-positive for anti-SSA and/or anti-SSB antibodies.
It is important to start using reliable contraception after pregnancy.
Systemic Lupus Erythematosus (SLE)
Systemic Lupus Erythematosus (SLE) is an autoimmune disease that affects different parts of the body. Read more about SLE on the website of the Norwegian Rheumatism Association (in Norwegian only).
Increased risk of complications during pregnancy
In women with SLE, pregnancy is generally considered high-risk, but it is important to emphasise that many women have less severe types of SLE, and that for the vast majority of women there are no serious complications. There is an increased risk of:
- Pre-eclampsia/eclampsia
- Premature birth
- Having a baby with lower-than-average birth weight
This risk is closely related to high disease activity during the pregnancy. The disease should therefore be in a quiet phase for a minimum of 6 months before you try to conceive, in order to reduce the risk of complications. Kidney inflammation as a result of SLE poses a risk to the mother and unborn child, making it especially important that the SLE is in a quiet phase.
Talk to your doctor before pregnancy
If you are thinking about trying for a baby, you should talk to your rheumatologist first. Your doctor should assess your disease activity and medical history, and you should have new urine and blood tests done. A full review of your medicines is important.
The doctor must assess the medicines you take
Some medicines must be discontinued well before you get pregnant, and may need to replaced with other medicines. To reduce the risk of your disease worsening or of complications, it is important to continue taking the medicines considered safe in pregnancy. This applies, among other things, to the drug Plaquenil®, which is recommended for use in pregnancy in all women with SLE (provided that they can tolerate the drug). From around week 12 of the pregnancy, all women with SLE are also recommended to take aspirin (Albyl-E®) to reduce the risk of pre-eclampsia/eclampsia.
Some women with SLE test positive for antibodies in their blood called antiphospholipids. These antibodies increase the risk of blood clots and miscarriage. If you have tested positive for these antibodies, and have previously had blood clots or a miscarriage, you should be prescribed preventive treatment with blood-thinning medication from when you start planning a pregnancy.
Some women with SLE also have antibodies called anti-SSA and/or anti-SSB. A small proportion (1-3%) of foetuses in mothers who are test-positive for anti-SSA and/or anti-SSB antibodies may develop congenital heart block (CHB). In the presence of maternal anti-SSA and/or anti-SSB antibodies, the foetal heart rate should be checked weekly at weeks 16-24 by your GP or midwife.
Disease activity may vary
The disease activity during a pregnancy can fluctuate in the same way as when you are not pregnant. The vast majority of women who become pregnant during a quiet phase of the disease will experience low or no disease activity during pregnancy. For those who experience a flare (exacerbation) of the disease in pregnancy, the symptoms are typically rashes, pain and possibly swelling of joints and general fatigue.
It is important that you are followed up by a rheumatologist and gynaecologist, including additional ultrasound scans during your pregnancy. You will also need to attend the standard antenatal appointments with your GP or community midwife in your municipality. Read more about follow-up care during pregnancy.
Spondyloarthritis and pregnancy
Most women with spondyloarthritis experience stable disease activity during pregnancy and for 12 months after giving birth.
Even if you do not have as much active inflammation, you may still experience fatigue and a lot of pain, especially in the pelvic region. It can be hard to tell if the ailments you have are caused by the disease or are due to being pregnant. Whatever the cause, keeping physically active is usually the best thing you can do to prevent pain and fatigue.
Although not many women have a disease flare after childbirth, the strain of the disease may still feel worse in the baby-to-toddler phase. You can breastfeed if any medicines you are taking are safe for breastfeeding mothers.
It is important to start using reliable contraception after pregnancy.
Psoriatic arthritis and pregnancy
If you have low disease activity when you become pregnant, there is a good chance of low disease activity during your pregnancy. In psoriatic arthritis, women with active disease can get better during pregnancy. Psoriasis of the skin also often gets better. Even if the disease is characterised by little active inflammation, you may still be bothered by fatigue and pain in your joints and pelvis.
In psoriatic arthritis, serious pregnancy complications are rare. There is also no increased risk of birth defects. There is, however, known to be a link between persistent active disease and the risk of the baby being born smaller than average. Other medical conditions, such as obesity, can affect the overall risk assessment.
Some women with psoriatic arthritis will experience worsening of the disease within the first six months of having a baby, but most of them will be back to their usual condition within 12 months of giving birth. If you’ve taken a break from your usual medicine during pregnancy, it may be important to start taking it again soon after having your baby to prevent a flare. Many medicines used in rheumatic disease are safe to take while breastfeeding too. It is important to talk to your doctor about this during your pregnancy.
Although very few women have a disease flare after childbirth, the strain of the disease may still feel worse in the baby-to-toddler phase. For the best possible treatment of the disease, a follow-up appointment with a rheumatologist is recommended in the first 12 months after your baby was born.
It is important to start using reliable contraception after pregnancy.
Childhood arthritis and pregnancy
About half of women with childhood arthritis do not have joint symptoms in adulthood. For these women, a pregnancy will usually not lead to increased joint pain.
If you have active disease in adulthood, you should plan your pregnancy in consultation with your doctor. The doctor will assess whether any preliminary examinations are necessary. This also applies to women with systemic childhood arthritis.
If you have low disease activity when you become pregnant, there is a good chance of low disease activity during your pregnancy.
For women with childhood arthritis, serious pregnancy complications are rare. There is also no increased risk of birth defects. There is, however a link between persistent active disease and the risk of the baby being smaller than average and being born somewhat prematurely.
Some women with childhood arthritis will experience worsening of the disease within the first few months after giving birth, but will be back to their usual condition within 12 months of having the baby.
If you have had a break from your regular medicines during pregnancy, it may be important to start taking them soon after childbirth to prevent worsening of the disease. Many medicines used in rheumatic disease are safe to take while breastfeeding too. Talk to your doctor about this during pregnancy.
Although very few women have a disease flare after childbirth, the strain of the disease may still feel worse in the baby-to-toddler phase. For the best possible treatment of the disease, follow-up is recommended within the first 12 months of childbirth.
It is important to start using reliable contraception after pregnancy.
Behçet’s disease
Behçet’s disease is a form of rheumatic vasculitis that typically causes mouth and genital ulcers, and may in some cases also affect the eyes, joints, skin, bowel and central nervous system. There is also a slightly increased risk of blood clots, but this is rare.
Pregnancy in women with Behçet’s is generally considered high-risk. The risk is particularly related to the effect on the internal organs, previous blood clots and the degree of active inflammation.
Disease activity should be as low as possible for at least six months before getting pregnant. This is the best starting point for low disease activity and as few complications as possible in pregnancy.
You and your rheumatologist should make a plan for which medicines you are to take while you are pregnant. It is important to follow your doctor’s advice on which medicines to take, and to continue taking medicines considered safe for pregnant women.
There is a slightly increased risk of premature birth in women with Behçet’s disease. A high degree of active rheumatic inflammation also increases the risk of pre-eclampsia/eclampsia and reduced birth weight. Blood-thinning medication reduces the risk of complications and is recommended in some women with Behçet’s.
Women with Behçet’s may experience a flare (exacerbation) of the disease after childbirth. You should therefore have check-ups with a rheumatologist and possibly other relevant specialists over the 12 months after having your baby.
Even if the disease is inactive, it is not uncommon to experience fatigue. This may feel like an added strain in the baby-to-toddler phase. Regular physical activity and practical help from family and friends can help prevent this.
It is important to start using reliable contraception after pregnancy.
MCTD and pregnancy
If you have mixed connective tissue disease (MCTD) you should see a rheumatologist if you are thinking about having a baby. You and the rheumatologist will then make a plan for your treatment and follow-up during pregnancy. If your kidneys, lungs or other internal organs are affected by MCTD, other specialists should also be involved. It is typically advisable to have a new cardiac ultrasound and a breath test in the 12 months before you become pregnant.
The disease activity should be as low as possible for at least six months before pregnancy – this is the best starting point for low disease activity and as few complications as possible in pregnancy.
Pregnancy in women with MCTD is generally considered high-risk, but it is important to emphasise that many women have less severe forms of MCTD, and that in the vast majority the pregnancy causes no complications. The risk lies mainly in the effect on the internal organs, a high degree of active inflammation, and the presence of special antibodies in the blood (ANA and subgroups, including anti-SSA and anti-SSB antibodies, and antiphospholipids).
Your rheumatologist will evaluate which medicines you can take during pregnancy, and which ones you must stop taking. Women taking Plaquenil® should continue to do so during pregnancy. Many women with MCTD should take blood-thinning medication during pregnancy.
It is not currently known what percentage of women experience exacerbation of MCTD during pregnancy. MCTD varies from one person to the next, and it may be helpful to consider whether your disease closely resembles arthritis, SLE, myositis or systemic sclerosis.
Women with MCTD have an increased risk of
- Reduced foetal growth
- Premature birth
- Pre-eclampsia/eclampsia
This applies primarily where there is a high degree of active disease and known effects on the internal organs. Blood-thinning medication reduces the risk of complications.
Women with MCTD should have regular follow-ups with a rheumatologist and a gynaecologist during pregnancy. It is important to have a urine test and your blood pressure measured at check-ups – this is the best way to detect pre-eclampsia.
If there are no complications during pregnancy, most women go on to have a normal delivery.
Some women with MCTD experience flare (exacerbation) of the disease after having their baby and should therefore have check-ups from a rheumatologist in the first 12 months after childbirth.
Even if the disease is inactive, it is not uncommon to experience fatigue. This may feel like an added strain in the baby-to-toddler phase. Regular physical activity and practical help from family and friends can help prevent this.
In MCTD, it is especially important to start using reliable contraception after pregnancy.
Myositis and pregnancy
The most common forms of myositis are polymyositis and dermatomyositis. If you have myositis, you should see your rheumatologist before trying for a baby. You and the rheumatologist will then make a plan for your treatment and follow-up during pregnancy. In women where the internal organs are affected, other specialists should also be involved.
Pregnancy in women with myositis is considered high-risk. This is primarily the case if you have
- Elevated pulmonary artery pressure
- Disease affecting the lungs themselves
- Pronounced muscular weakness, or
- A high degree of active inflammation.
Cardiac ultrasound, breath test (spirometry) and, if warranted, lung imaging over the 12 months preceding pregnancy are advisable.
The disease activity should be as low as possible for at least six months before pregnancy – this is the best starting point for low disease activity and as few complications as possible in pregnancy.
It is important to not stop taking your medicines and using contraception until you have seen a rheumatologist. Medicines that may be harmful to the unborn child must be replaced by medicines that are safe to take during pregnancy well in advance of becoming pregnant. Some women with myositis should take blood-thinning medicine during their pregnancy.
Regular physical activity before and during pregnancy is important for everyone. In women with myositis, it is especially important to maintain muscle strength. You should therefore be offered a referral to a physiotherapist for follow-up and advice on exercise adapted to both the disease and pregnancy.
If elevated pulmonary artery pressure or severe involvement of the lungs themselves are detected, the risk to the mother and foetus is so great that pregnancy is often discouraged.
Myositis is rare in young women, but we do not have reliable figures for how many experience a flare (exacerbation) of the disease during pregnancy.
Women with myositis may be at increased risk of reduced foetal growth, premature birth and pre-eclampsia/eclampsia. In general, these complications are seen primarily in persistent active disease.
Some women with myositis experience a flare (exacerbation) after childbirth, and you should therefore have check-ups with a rheumatologist over the first 12 months after having your baby. Even if the disease is inactive, it is not uncommon to experience fatigue. This may feel like an added strain in the baby-to-toddler phase. Regular physical activity and practical help from family and friends can help prevent this.
It is important to start using reliable contraception after pregnancy.
Takayasu’s arteritis and pregnancy
Takayasu’s arteritis (TA) is a rare condition involving rheumatic inflammation of major blood vessels, especially the main artery (aorta) and its branches. If you have TA, you should see your rheumatologist if you want to become pregnant. You and the rheumatologist will make a plan for your treatment and follow-up care during pregnancy.
Pregnancies in women with TA are generally considered high-risk. The risk depends on:
- Which blood vessels are affected
- Whether there is ongoing active inflammation of the blood vessels, and
- Whether there is chronic damage to the blood vessels.
New scans should be done to map the extent of inflammation in blood vessels (typically CT or MRI angiography). Where TA affects the renal (kidney) vessels, this can cause high blood pressure, which is a separate risk factor in pregnancy. Women with TA who have high blood pressure should be evaluated by a renologist to optimise their blood pressure before, during and after pregnancy.
The disease activity should be as low as possible for at least six months before getting pregnant – this is the best starting point for low disease activity and as few complications as possible in pregnancy.
It is important to not stop taking your medicines and using contraception until you have seen a rheumatologist. Well before becoming pregnant, medicines harmful to the unborn child must be replaced by medicines that can be taken during pregnancy. Most women with TA should take blood-thinning medication during pregnancy to prevent pre-eclampsia/eclampsia.
Some women with TA may experience a flare (exacerbation) in pregnancy, but no definite link has been made between pregnancy and increased disease activity.
There are no reliable figures for how many expectant mothers experience pregnancy complications. In TA, it is mainly the risk of pre-eclampsia/eclampsia that doctors will be alert to.
To lower the risk of pre-eclampsia/eclampsia as much as possible, you will need:
- Effective blood pressure treatment
- Blood-thinning medication
Persistent active inflammation increases the risk of reduced foetal growth and premature birth, so it is important to continue taking medications indicated in pregnancy.
It is important to have a urine test and your blood pressure measured at check-ups – this is the best way to detect pre-eclampsia.
Blood pressure management is especially important during and immediately after childbirth. The rheumatologist should make both the gynaecologist and the anaesthesiologist aware of this so that the anaesthesiologist can assess the expectant mother well before she goes into labour.
Some women with TA experience a flare (exacerbation) after giving birth, and women with TA should therefore have regular check-ups with a rheumatologist over the 12 months after giving birth.
Even if the disease is inactive, it is not uncommon to experience fatigue. This may feel like an added strain in the baby-to-toddler phase. Regular physical activity and practical help from family and friends can help prevent this.
It is important to start using reliable contraception after pregnancy.
Granulomatosis with polyangiitis (GPA) and pregnancy
Women with GPA should contact their rheumatologist if they want to become pregnant. You and the rheumatologist will then make a plan for your treatment and follow-up during pregnancy. If your kidneys, lungs, heart or other internal organs are affected, other specialists should also be involved. Relevant organ screening, such as breath testing (spirometry), should be carried out over the 12 months before pregnancy.
Pregnancies in women with GPA are generally considered high-risk. The risk mainly depends on whether internal organs, such as the kidneys and lungs, are affected. Where GPA affects the upper respiratory tract, such as in subglottic stenosis, this will also be taken into account in assessment of the risk. In addition, the risk depends on the degree of active inflammation.
The disease activity should be as low as possible for at least six months before pregnancy – this is the best starting point for low disease activity and as few complications as possible in pregnancy. Blood pressure should be well controlled before and during pregnancy – especially if your kidneys are affected.
It is important to not stop taking your medicines and using contraception until you have seen a rheumatologist. Medicines that may be harmful to the unborn child must be replaced by medicines that are safe to take during pregnancy well in advance of becoming pregnant. For women taking rituximab, it is important to plan the optimal timing of this medication before and after pregnancy. Some women with GPA should take blood-thinning medication during their pregnancy.
GPA is rare in young women, and there is a lack of reliable data to indicate how many women experience disease flares during pregnancy. Active disease at the time you become pregnant is a risk factor for continued active disease during pregnancy.
In women with GPA, there is a slightly increased risk of reduced foetal growth, premature birth and pre-eclampsia/eclampsia. Doctors will be alert to the risk of pre-eclampsia/eclampsia particularly in cases of known kidney involvement. Persistent active inflammation increases the risk of all the complications mentioned above. To reduce the risk as much as possible, the following are important:
- Lowest possible disease activity
- Good blood pressure management
- Blood-thinning medication for those who may benefit from this.
It is typically a gynaecologist who assesses the dosage of, and time to stop taking, blood-thinners before childbirth. In cases of subglottic stenosis, disease affecting your heart or lungs, you should be assessed by an anaesthetist well in advance of delivery.
Some women with GPA experience exacerbation after giving birth and should therefore have regular check-ups with a rheumatologist within 12 months of giving birth. Even if the disease is inactive, it is not uncommon to experience fatigue. This can be an added strain in the baby-to-toddler phase. Regular physical activity and practical help from family and friends can help prevent this.
It is important to start using reliable contraception after pregnancy.