Planning for a baby
It’s best to discuss your pregnancy plans with your doctor or rheumatology nurse specialist before conception, particularly because some of the drugs you’re likely to be taking for your arthritis may need to be changed.
This way, you'll improve your chances of having a safe pregnancy and a healthy baby.
When is the best time to have a baby?
It’s better to try for a baby while you're in a good phase with your arthritis so you can reduce the drugs you need to take. Most women with lupus who want to become pregnant should do so during a quiet phase (remission).
If you're over 35 years old it may be harder to get pregnant. If you wait until you're over 40 you may be more likely to miscarry and there will be a greater risk of having a baby with a condition such as Down's syndrome. These risks are not affected by whether you have arthritis.
Anyone trying for a baby should stop smoking to reduce the chance of having a small baby (due to restricted growth) and also reduce the risk of cot death. You should minimise the amount of alcohol you drink and not take any recreational drugs.
If you're overweight it’ll be harder for you to become pregnant and could make you more likely to develop diabetes during pregnancy. So try to lose some weight before you get pregnant, which will help your joints as well.
Should I stop all my drugs before becoming pregnant?
You shouldn’t stop taking prescribed drugs without talking to your doctor first. Many drugs can be continued safely in pregnancy. Your doctor will aim to prescribe the safest combination of drugs at the lowest reasonable dose that will keep your arthritis under control. This approach minimises the risk of the drugs causing problems with your pregnancy.
Some recent studies suggest that non-steroidal anti-inflammatory drugs (NSAIDs) could make it more difficult to conceive and, if taken around the time of conception, may increase the risk of miscarriage, so you might want to discuss this risk with your doctor. Paracetamol, taken in normal doses, hasn't been linked with either of these problems.
Stopping your drugs could make your arthritis worse, but your doctor will be able to advise you on drugs that you'll be able to take. You may also be able to use other pain-relief treatments, such as physiotherapy and acupuncture.
Conception and fertility problems
Your fertility isn’t likely to be affected by arthritis, but it may take longer for you to become pregnant if your arthritis is active. An increased rate of miscarriage is seen in some patients with lupus and antiphospholipid syndrome (APS).
In other patients, the disease being active and taking certain drugs (such as cyclophosphamide) are the main risk factors that make it more difficult to get pregnant. This means it’s very important to plan to get pregnant at times when your condition is under control and stop certain harmful drugs in advance.
Does it matter if the father is taking drugs for arthritis?
Some arthritis drugs can cause problems in men trying to father a child. For instance, cyclophosphamide can reduce fertility in men. Doctors advise men to stop this drug three months before trying to father a child.
Many doctors used to advise men to stop taking sulfasalazine and methotrexate before trying to father a child. Current guidelines, however, advise that men do not need to stop sulfasalazine or methotrexate unless they have been trying to father a child for more than one year, and have been unsuccessful.
Sex and relationships
Arthritis can affect sex and your relationships, this section looks at some of the common challenges and ways to manage them.
Rheumatology nurse specialist
A rheumatology nurse specialist has expert experience in looking after the needs of people with arthritis and related conditions.
Should I take supplements?
Women who want to have a baby should take a folic acid tablet (standard dose is 0.4 mg) every day from three months before the time of conception until 12 weeks into the pregnancy. Women who stopped taking methotrexate more than three months before getting pregnant can take the standard dose.
Women who had not stopped taking methotrexate less than the suggested three months before becoming pregnant, should take a higher dose of folic acid (5 mg a day) throughout pregnancy and up to when their child turns 12 weeks old. This is because the methotrexate that was previously taken will have reduced folic acid levels.
Women who decide to continue taking the drug sulfasalazine during pregnancy are also advised to take 5 mg of folic acid a day during pregnancy up until when their child turns 12 weeks old.
Folic acid will reduce the risk of your baby having a defect in the spinal canal (spina bifida). You can get folic acid from supermarkets, health food shops or chemists. Daily doses of 5 mg of folic acid will need to be prescribed by a doctor.
You should avoid supplements other than folic acid and iron unless you have a specific deficiency, such as a lack of vitamin D. Some Asian women may be particularly at risk of vitamin D deficiency due to low exposure to sunlight with some traditional dress and a diet that’s low in this vitamin. This can lead to osteomalacia.
If you’re taking steroids during pregnancy you may also be advised to take calcium and vitamin D tablets to help protect your bones from thinning (osteoporosis).
What are the chances of my child having arthritis?
You may be worried that your baby could develop arthritis in later life. Most forms of arthritis do run in families to some extent, and the chances vary depending on the type of arthritis you have.
But for most types the chances of passing it on to your children aren’t very high and shouldn’t usually affect your decision to have children.
There are also many other factors involved in the development of arthritis, not just the genes inherited from parents – these include, for example, chance itself, joint injury, certain jobs, smoking, being overweight and environmental triggers, such as certain infections.
You should discuss the risks associated with your particular type of arthritis with your doctor, but the risks associated with common forms of arthritis are detailed below.
Most forms of osteoarthritis aren’t usually passed on from parent to child. Other factors – such as age, joint injury, being overweight and certain occupations involving heavy labour – play a more important part.
One common form of osteoarthritis that does run strongly in families is nodal osteoarthritis. This form of arthritis mainly affects women and causes firm knobbly swellings on the fingers and often swelling at the base of the thumb, just above the wrist.
Nodal osteoarthritis usually doesn’t start until women are in their 40s or 50s, around the time of the menopause, so you may not develop it while you’re of child-bearing age. The chance of nodal osteoarthritis being passed on from mother to daughter is about one in two (50%).
Although several members of the same family can be affected by rheumatoid arthritis, the tendency to pass it on from parent to child isn’t very strong.
Research is continuing in this area, but the risk of a child inheriting rheumatoid arthritis from a parent is between 1 in 100 to 1 in 30 (about 1–3%) so they’re far more likely not to get it than to get it.
The chance of a child inheriting ankylosing spondylitis is estimated at about one in six if the parent has the gene HLA-B27, and about 1 in 10 if not. However, the way that the condition runs in families isn’t straightforward so it’s best to discuss this with your rheumatologist.
When ankylosing spondylitis occurs in a family where other members have it, it tends to be less severe than when there’s no apparent family link.
The risk of passing on psoriatic arthritis to your child is probably similar to the risk for rheumatoid arthritis at about 1 in 30, although the risk of the child developing psoriasis is higher.
If you have lupus the chances of your child developing it in later life are about 1 in 100. Because of the way the genes involved work, there’s actually a greater risk of other relatives developing the disease – for example, 1 in 33 (3%) for the sister of someone with lupus (the risk is lower for brothers).
During the pregnancy
All pregnant women (whether they have arthritis or not) are recommended to have an ultrasound scan at 11-12 weeks to check the dates of the pregnancy. This scan can also be used to look for any abnormalities in the pregnancy but a further scan is carried out at 18-20 weeks to check that everything is fine.
The doctors choose this time because the baby is bigger and it’s easier to check for any problems then. If any problem is found at your 20-week scan, the doctors and midwives will talk to you about it and discuss the implications and options available to you.
Additional, more detailed scans may sometimes be needed in people with arthritis, for example if you’ve taken tablets or drugs during the pregnancy that may cause particular problems or if you carry anti-Ro antibodies in your blood.
Sometimes you may need two or three scans before the doctors can see everything clearly, but that doesn’t necessarily mean that there’ll be a problem. Sometimes the parts that need to be seen may be hidden, by the baby’s hand for example. So don’t worry if everything can’t be seen clearly at first and you’re asked to return for a further scan.
Will I be able to do my exercises?
It’s important to keep exercising for as long as possible during your pregnancy. As your pregnancy advances and you gain weight you may find it easier to exercise in a swimming pool, where the water will help to support your weight.
Will the pregnancy affect my arthritis?
Most women get aches and pains, particularly backache, during pregnancy. The effect of pregnancy on arthritis varies depending on the type:
- Most women with rheumatoid arthritis will be free of flare-ups during pregnancy, although they’ll probably return after the baby is born.
- If you have osteoarthritis, particularly of the knee or hip, the increase in your weight as the baby grows may cause you problems.
- Other disorders, such as ankylosing spondylitis, may improve or become worse – there’s no consistent pattern.
Will my arthritis affect the pregnancy?
Apart from lupus, most types of arthritis don’t harm the baby or increase the risk of problems during pregnancy. You should be aware about the possible effects of the drugs you take while you’re pregnant, as they can sometimes affect the pregnancy.
Will my arthritis affect the delivery?
Your arthritis shouldn’t usually affect the delivery. However, if you have arthritis in your back or hips then moving these joints during labour may cause pain. Different positions can be used in childbirth which should allow you to give birth naturally, even if you’ve had hip replacements.
If you have a lot of back problems, it’s a good idea to talk to an anaesthetist about whether you should have an epidural for pain relief. It’s not always possible (especially with ankylosing spondylitis) to perform an epidural, but the anaesthetist will tell you about the options that are available.
How do blood tests help doctors to manage my pregnancy?
When you’re pregnant you may have symptoms like tiredness and joint pain, and it can be difficult to tell whether these are due to the pregnancy or your arthritis. Blood and urine tests can help doctors to tell the two things apart, so these tests will be done regularly throughout your pregnancy, especially if you’re feeling unwell.
Some special blood tests are carried out either before you start trying to get pregnant or early in pregnancy to help your doctors decide whether you need any special treatment or monitoring. These tests are for:
These are present in about 30% of patients with lupus and also occur in Sjogren’s syndrome. If you have these there’s a small chance (about 1 in 50) that they could affect your baby. The effect could be that the baby is born with a rash that will clear up (usually within a few weeks to months) or that your baby’s heartbeat may become slow (congenital heart block).
This heart problem develops around 18 weeks into pregnancy and there are different types that may continue after the birth. Remember that even if you have anti-Ro antibodies there’s only a small chance that your baby’s heart will be affected, but your doctor will carefully monitor your baby’s heartbeat during the pregnancy. Some babies affected in this way may need to have a heart pacemaking device inserted after birth, but most will do very well.
Babies who are affected by anti-Ro antibodies from their mother are said to have the neonatal lupus syndrome. This doesn’t mean that they’ll get lupus when they’re adults, but if you’ve had one baby with this syndrome then your chances of having the same problem in future pregnancies are higher. You should discuss future pregnancy plans carefully with your lupus specialist.
These antibodies are present in 20–30% of patients with lupus. They’re also found in patients with antiphospholipid syndrome (APS). There are two main tests for these antibodies:
- anticardiolipin test
- lupus anticoagulant test.
Usually both tests are done. If either or both is positive then you have antiphospholipid antibodies in your blood.
In many people antiphospholipid antibodies don’t cause any problems, but in some people they can increase the chance of miscarriage or slowing the baby’s growth in the womb.
If you’re a pregnant woman with antiphospholipid antibodies you’ll usually see a consultant with expertise in high-risk pregnancies. You’ll be given a low-dose aspirin tablet to take every day, but you may also need daily injections (which you can give yourself) of a blood-thinning drug (anticoagulant) called heparin. This drug doesn’t cross the placenta so it won’t affect your baby.
Lupus (SLE) and pregnancy
Will the pregnancy affect my lupus?
It's difficult to give advice for everyone as lupus can vary from mild to severe. Although all lupus pregnancies are still considered 'high risk', improvements in healthcare have meant that many patients with lupus have had no complications, particularly if their pregnancy has coincided with a quiet phase of their disease (remission). If, however, you have severe lupus you may be advised against having a baby as pregnancy can put an enormous strain on your heart, lungs and kidneys.
For most women, however, it's safe to proceed under careful supervision. It's always best to discuss this with your doctor or rheumatology nurse specialist before conception.
Women with lupus who want to become pregnant should do so during one of these quiet phases of their disease, and after talking to their doctor or rheumatology nurse specialist. You may stay in remission or have flare-ups while you're pregnant, although flare-ups involving the skin and joints are less likely towards the end of pregnancy.
You should take care about the drugs you take during pregnancy; however, the risk of a problem to the baby may be greater if you don't take the drugs necessary to keep your lupus under control or if you stop them suddenly, so it's vital to discuss and plan pregnancy in advance with your doctor.
Will my lupus affect the pregnancy?
Some women with lupus do have a higher risk of complications during pregnancy, though most will have a successful pregnancy. Your pregnancy will be closely monitored, and your obstetric consultant will need to see you frequently in the antenatal clinic. There’s a higher risk of miscarriage if you have lupus, and the miscarriage may be later than usual in the pregnancy – up to 24 weeks if you also have antiphospholipid syndrome (APS).
Planning your pregnancy will mean that your lupus specialists and the obstetric team can work closely together. Because babies born to women with lupus can be smaller than average, you may be advised not to have your baby at your local hospital but at a more specialist site where they can work better as a team and which has the best facilities to look after very small babies.
You and your baby may be checked more often than most women during pregnancy. If your lupus is mild you probably won't need any extra scans, but you may need additional scans if your disease is more severe, especially if your kidneys are affected, or if you test positive for certain antibodies in your blood.
These antibodies are called lupus anticoagulant, anticardiolipin and anti-Ro, and these tests will usually be done either before you become pregnant or early in the pregnancy.
The medical team will also use other ways of monitoring your baby, which may include regularly monitoring its heartbeat and checks on the blood flow to the womb and the umbilical cord (using ultrasound scans). Your blood pressure and urine will also be checked regularly.
What types of problem can happen with lupus later in pregnancy?
If you have kidney disease from your lupus or your blood pressure is high before you become pregnant your blood pressure may increase during pregnancy. If that happens after 20 weeks of pregnancy with protein in your urine it’s called pre-eclampsia, so you'll need regular checks for blood pressure and for protein in your urine.
High blood pressure can cause severe headaches and vision problems, so you should talk to your doctor if you develop these symptoms during pregnancy.
Your baby may not grow as fast as normal (growth restriction), and your waters may break much earlier than usual or you may go into labour early (pre-term delivery).
There's some evidence that a low-dose aspirin tablet taken every day can lower the risk of some of these problems. Your doctor will discuss this with you when you first go to the antenatal clinic.
Will my lupus affect the labour?
You should have a normal labour. But if you go into labour too early, the doctors may try to stop you giving birth, with drugs, to allow more time for the baby's lungs to mature. Doctors may sometimes feel that it’s safer (for you or for the baby) if your baby is delivered by caesarean section. This option would be discussed with you during the pregnancy, well before the time of labour.
Will my lupus affect the baby?
There's a risk of babies born to mothers with lupus being smaller than usual. If that happens, your baby may need to spend a few days in the newborn (neonatal) nursery. If your baby is born very early, they'll spend longer in the nursery and may need help with breathing initially.
After the birth
Coping with the demands of a small baby is exhausting for any new mother, and if you have arthritis the stresses can be much greater. Women with rheumatoid arthritis may find that their arthritis flares up again in the weeks after the birth (often after going into remission during the pregnancy).
To help prevent flares in arthritis during and after pregnancy it's important that you don't stop safe treatment during pregnancy or breastfeeding.
Before the birth it may be worthwhile to arrange for extra help from family and friends for once the baby is born. If necessary, extra help can be arranged - discuss this with your doctor or with Social Services.
Following the birth, a physiotherapist or occupational therapist may need to be involved in the aftercare; holding, dressing, washing and feeding a baby can all be difficult because of stiffness.
There are practical steps you can take to reduce impact on your wrists, hands and back. For example, a high changing station would mean you don't place undue strain while you're bent over changing your baby's nappy. Or, a changing station which you could use sitting down might help.
There are alternatives to carrying your baby in your arms, for example there are products that allow you to safely strap your baby to your chest to reduce the load on your hands and wrist. Ask your doctor how to go about getting help.
If you already have another small child or children, you may need to arrange for extra help in caring for them. Extra support from a partner, other family members or friends is crucial in sharing the care of a small baby, and help from Social Services can also help you to manage in the first few months after birth.
What about my medication?
If any drugs for arthritis were stopped before or during your pregnancy most doctors recommend going straight back on them, except where you've been put on alternative drugs which are safe in pregnancy and when breastfeeding or when the drugs would stop you breastfeeding.
It's important that women continue safe treatments during breastfeeding and not wait until after their arthritis flares up again before returning to their medication. Ask your doctor or rheumatology nurse specialist for advice on this.
If you have a flare-up shortly after the birth, perhaps before the disease modifying anti-rheumatic drugs (DMARDs) have started working again, then your doctor may give you a short course of steroids. If only one or two joints are troublesome these can be injected with steroids. Physiotherapy can also be helpful during this time.
Will I be able to breastfeed?
Breastfeeding is best for your baby. Even if you only breastfeed for a few weeks it will still benefit your baby, so the doctors and midwives will try very hard to keep you on drugs that won't affect your baby through your milk. Drugs you take while breastfeeding may pass into the breast milk, although only in small amounts, so it's sensible to take as few as possible.
Drugs, pregnancy and breastfeeding
In an ideal world the process of having children, from conception to breastfeeding, for all women would be drug-free because we can never be 100% sure that the drug will be harmless to the developing child.
In pregnant women with arthritis however, certain drugs are important to have a successful outcome to prevent disease flares which may cause harm to the baby. Here we've provided a summary of what we know about the effects of these drugs during pregnancy and while breastfeeding.
This summary is based on guidelines produced by the British Society for Rheumatology (BSR). In some cases there's only limited information available, but we do know that, for most drugs, many pregnant or breastfeeding women will take them without any problems.
We strongly recommend that you discuss each drug you take with your doctor - either when you're planning a family or as soon as possible if you unexpectedly become pregnant.
More information about specific drugs and pregnancy
Paracetamol and NSAIDs
Paracetamol is a good form of pain relief and is often used by women who are pregnant or breastfeeding without causing any problems.
BSR guidelines advise intermittent use by pregnant women if possible to reduce an increased risk of childhood asthma found in some but not all research studies.
Most women can take the usual dose, even during pregnancy, but if your liver or kidneys aren't working properly you may be told to take a lower dose.
Non-steroidal anti-inflammatory drugs (NSAIDs)
Some studies suggest that taking NSAIDs may make it more difficult to get pregnant and that they may increase the risk of miscarriage if taken around the time of conception. BSR guidelines advise cautious use of these drugs in early pregnancy.
It's best to use the lowest dose of NSAIDs you can, and your doctor will advise you to stop them completely after 32 weeks of pregnancy. When babies are born a blood vessel in their heart closes, which redirects the baby's blood to allow it to get oxygen from its lungs, rather than the placenta.
But large doses of NSAIDs taken towards the end of pregnancy may cause this blood vessel in the baby's heart to close early, while the baby is still in the womb rather than at birth. This problem usually resolves itself completely if the NSAIDs are stopped.
NSAIDs might also be stopped during delivery as they can prolong the labour and cause excessive bleeding. If you have lupus or antiphospholipid syndrome (APS) you may need to take low-dose aspirin (usually 75 to 150 mg per day) throughout pregnancy, especially if you've had previous miscarriages.
Low-dose aspirin doesn't affect early pregnancy, the development of the blood vessel in the baby's heart later in pregnancy or delivery as described for NSAIDs above.
Most NSAIDs don't enter the breast milk in large quantities, but high-dose aspirin (300 mg or more per day) should be avoided while breastfeeding. You should talk to your doctor about what is best for you and your baby.
Research and new developments in pregnancy and arthritis
Our understanding of biological therapies and newer immunosuppressive drugs is growing. For instance, in the UK the British Society of Rheumatology (BSR) is gathering information on over 16,000 patients treated with adalimumab, etanercept and infliximab in a biologics registry (called the BSRBR) to examine the safety of these drugs.
Information from this registry on patients who continue taking these drugs while pregnant or breastfeeding will allow doctors to better determine their safety in these circumstances. There is, however, still an urgent need for studies clarifying the risk of anti-rheumatic drugs during breastfeeding and in men trying to father a child.
When Emily and her partner Nick were worried her arthritis might make having a baby difficult, they went to see a specialist to discuss their options.
The couple were relieved to hear that despite Emily's rheumatoid arthritis they still had every chance of starting a family.
Their careful and sensible planning has paid off and Emily and Nick were delighted with the safe arrival of their healthy and beautiful son Thomas.
Emily, who was 36 when she had Thomas, first started to have symptoms when she was 21 and she was diagnosed with the inflammatory form of arthritis at the age of 24.
Over the years, Emily's condition has been quite debilitating and at times it has caused her difficulties walking.
One of Emily's early concerns after being told that she had arthritis was whether or not she could have children, as she has always wanted to have a family.
With this in mind Emily and Nick went to see Dr Ian Giles, a consultant rheumatologist who has developed a specialist rheumatology-obstetric clinic with colleagues in women's health at University College London Hospitals.
Emily said: "We had a big chat with Dr Giles about all of this before trying. We talked about what we could do, the latest thinking and the latest stats, and what the chances were of me having a flare-up."
Making an informed choice
Emily's arthritis was quiet before she conceived, and it can be a good idea for a woman to choose a time when her arthritis is quiet or in remission to try for a baby.
Emily said: "It was nice to be able to make an informed choice, and I decided to stay on the medication up until the end of the second trimester.
"Since coming off the medication, I haven't had any problems.
"I had morning sickness, but I haven't had any problems as a result of my condition before or after coming off the medication. I have had a couple of slight twinges in my knee, though that might have been due to the pregnancy itself."
The drug that Emily continued to take until six months into her pregnancy was an anti-TNF drug called adalimumab.
Latest medical thinking
Emily's approach has been in line with the latest thinking from the British Society for Rheumatology (BSR), which recently released new guidelines for healthcare professionals treating women with arthritis who are trying to conceive, are pregnant or are breastfeeding.
This latest thinking, which is evidence based, says that it's very important to control the mother's arthritis and maintain her health during pregnancy. The strong evidence is that this is not only the right thing to do for the mother, but also for the baby.
The guidelines are the result of three years of research by a BSR working group which reviewed all relevant published information on this topic.
While the warnings around some drugs remain, for other medications, including several of the newer biologic drugs, there is a growing evidence base that women can safely take these drugs during part or all of their pregnancy.
The lead author of the guidelines was the specialist that Emily went to see, Dr Giles.
He stressed the importance of controlling women's arthritis during pregnancy with medicines that are safe in pregnancy rather than stopping them and allowing their disease to become active.
Dr Giles said: "Active disease can be very harmful for the pregnancy. With rheumatoid arthritis, modern studies have shown that it does not spontaneously improve in pregnancy in as many patients as was previously thought and pregnancy problems, such as premature deliveries and reduced growth for babies is now known to be associated with disease flares.
"Women should not simply stop all medications during pregnancy.
"The important thing for women with arthritis is to plan ahead and talk to their medical team about their options."
This is exactly what Emily and Nick did and they are delighted with the outcome.
Excitement over new arrival
Thomas was born at the end of March 2016, weighing 9 lbs, and Emily and Nick are thoroughly enjoying life with their healthy new arrival.
Emily wanted to breastfeed, and decided not to go back on medication straight away for this reason. There is limited information available about the use of adalimumab by women who are breastfeeding. The guidelines state that small amounts of the drug may pass into the breast milk, but this doesn't appear to be harmful.
Emily said: "I have decided to go down the route of not going back on the medication and then seeing how it goes and knowing that going back on the medication is an option, should I need it."
Emily is adjusting perfectly to life as a new mother.
She said: "When the health visitor came she said that Thomas is very authoritative in the way he demands attention.
"I think that was a very polite way of saying that he can cry very loudly.
"Nick and I are absolutely over the moon at the arrival of Thomas."
You can read more of our supporter stories on our Your stories page.