Arthritis, autoimmune conditions and pregnancy

Planning is where it starts: outcomes are best when conception follows several months of good control, ideally remission or low disease activity, on medicines that suit pregnancy. Conceiving while the disease is very active raises the chance of flares during pregnancy and of problems for the baby, an early birth among them, so the time taken to settle it beforehand pays off.

The ideal place to start is a pre-pregnancy review with your rheumatology team. That leaves time to come off any medicine that is unsafe in pregnancy and move to a suitable alternative, to bring the disease under control, to begin folic acid, to check that you are protected against measles and rubella, since the MMR vaccine is a live vaccine that has to be given before pregnancy and only when your medicines allow it, and to plan how you will be monitored. If a pregnancy has already begun, the team should hear at once, and nothing should be changed before it does.

Many people assume treatment has to stop altogether in pregnancy. Untreated disease, though, is far from harmless: uncontrolled inflammation puts both mother and baby at risk in its own way. The medicines to aim for are the ones that hold the condition steady and suit pregnancy at the same time. Hydroxychloroquine and sulfasalazine (taken with folic acid), both disease-modifying medicines (DMARDs), are among the effective treatments that can carry on, as are azathioprine and several of the anti-TNF biologic medicines. Certolizumab stands out because very little of it crosses to the baby, which often makes it well suited to pregnancy. If a biologic other than certolizumab is carried on late into pregnancy, how late depending on the medicine, the baby's live vaccines are put off until six months of age, since some of the medicine can pass to the baby; the rotavirus vaccine, due at eight weeks, is then missed, as its course has to be finished by 24 weeks of age. Your team will say whether this applies, and whoever vaccinates your baby needs to know. Azathioprine, like methotrexate, damps down the immune system, so infections are likelier while you take it. Prednisolone and other steroids can be used at the lowest dose that works, and for simple pain relief paracetamol is considered safe.

Then there are the medicines that can harm a developing baby, which have to be stopped and replaced with a safer option before conception. Among them are methotrexate, which is stopped at least one month ahead, the minimum in the UK rheumatology guideline, and often three months; leflunomide, another DMARD, which persists in the body for many months and has to be cleared by a special washout procedure; and mycophenolate mofetil. Only exceptional circumstances bring cyclophosphamide, reserved for severe, organ-threatening disease, into a pregnancy. The newer JAK inhibitor tablets are kept out of pregnancy too, for the time being. Anti-inflammatory painkillers (NSAIDs) are best used sparingly and are stopped by 28 weeks, the end of the second trimester; they can also slow conception, so pausing them while trying for a baby is reasonable.

Starting, stopping or altering a medicine is not something to do without advice. Some treatments must stop well ahead of conception; others matter too much to give up; and stopping abruptly can bring on a flare. No one plan suits everybody; the one for you is worked out with your rheumatology and maternity teams.

What pregnancy does to arthritis varies by condition and from woman to woman. In rheumatoid arthritis, some improvement during pregnancy is reported by around half to two-thirds of women, and once the body's pregnancy changes reverse, a flare in the first few months after the birth is common. Axial spondyloarthritis gives no such steer: pregnancy may improve it, leave it unchanged or aggravate it, and it can flare after the birth as well.

Because that postnatal flare is common, a plan settled with your team beforehand means it can be treated promptly, before it gets in the way of your recovery or of looking after the baby. During pregnancy itself, a flare is often best treated with a short course of prednisolone while a pregnancy-compatible medicine continues.

For certain autoimmune conditions, pregnancy takes particular planning. In lupus the aim is to conceive in a settled phase, ideally at least six months after the last flare; hydroxychloroquine, which helps to keep flares away, usually carries on throughout. Raised blood pressure and pre-eclampsia are likelier in a lupus pregnancy, and for that reason the kidneys and the blood pressure come in for close attention. Particular antibodies in the mother (anti-Ro or anti-La) carry a small chance of affecting the baby's heartbeat, so for women who carry them the monitoring is stepped up: a weekly check of the baby's heart rate from week 16, with an ultrasound scan each month.

In antiphospholipid syndrome (APS) the blood clots too readily, which in pregnancy can show as miscarriage that recurs, or as other complications. This is, though, very treatable: low-dose aspirin together with heparin injections, started early and continued under close monitoring, greatly improves the chance of a successful pregnancy. Warfarin and the newer direct oral anticoagulants, the blood-thinning tablets used outside pregnancy, are generally avoided during it; heparin, which does not cross to the baby, takes their place.

Pregnancy with a rheumatic or autoimmune condition draws on more than one specialty, rheumatology and obstetrics above all, and the planning is often done in a combined or maternal-medicine clinic where the two teams sit together. Dr Borukhson practises within a world-renowned tertiary centre, with ready access to consultant colleagues in the other specialties a pregnancy with one of these conditions may call on. Where it helps, she can bring those specialists in directly, and particularly complex cases can go to a multidisciplinary team meeting (MDT) with minimal delay. Whenever more than one kind of expertise is needed, the strands of your care can be drawn together and decisions reached promptly.

Most of what comes up in a planned pregnancy belongs to your next appointment with the rheumatology or maternity team; a few things should not wait for it.

Treat any of these as a 999 or A&E emergency: call 999 and do not drive yourself to A&E.

• Severe illness with suspected sepsis: a high fever with shaking, confusion, rapid breathing, or feeling dramatically worse over hours
• With a fever or feeling unwell, a rash that does not fade when you press it, a stiff neck with eyes that cannot bear bright light, or skin, lips or tongue turning blue, grey, pale or blotchy, since these can be signs of meningitis or sepsis, and sepsis is likelier in pregnancy, in the six weeks after a birth, a miscarriage or an abortion, and on medicines that weaken the immune system; on black or brown skin the rash and the change of colour may be easier to see on the palms of the hands or the soles of the feet
• Breathlessness that is severe, with gasping, choking or no breath to get words out; coughing up blood; or chest pain that catches as you breathe in, since a clot can travel to the lungs, and pregnancy itself makes clots likelier
• Chest pain that is crushing, tight or like a pressure, that spreads to an arm, the jaw, the neck, the stomach or the back, that comes with breathlessness, sweating, feeling sick or feeling light-headed, or that came on suddenly and does not go away
• Palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, since a heart whose muscle or rhythm is affected has to be checked at once
• Any chest pain while you take sulfasalazine, which the NHS advice for this medicine treats as a 999 or A&E emergency
• A rash that spreads across the body, skin that blisters or peels, or lips, mouth or eyes that turn sore or swollen, since this can be a severe reaction to a medicine, such as Stevens-Johnson syndrome, which needs treating in hospital straight away, though the spots and blisters of chickenpox, or the rash of measles, rubella or slapped cheek syndrome, are not what is meant
• Sudden weakness or numbness on one side, a drooping face or difficulty speaking, a sudden severe headache, sudden confusion or a seizure, or sudden loss of vision, any of which can be a stroke, even if it stops after a short time, and antiphospholipid syndrome raises that risk, while clots of every kind are likelier in pregnancy
• An eye that suddenly and completely loses its sight
• Vomiting that will not let your tablets stay down, or, during an illness or after an injury, becoming very drowsy or confused, or fainting, after more than a few weeks on steroid tablets, or repeated courses or injections in the past year, since your body may be running short of cortisol and the steroid may need to be given by injection; have your NHS Steroid Emergency Card ready
• Sudden severe pain in the abdomen or back, since the pancreas can react to prednisolone
• Lips, mouth, throat or tongue that suddenly swell, a throat that feels tight, very fast breathing or a struggle to breathe or to swallow, skin, tongue or lips turning blue, grey or pale (on black or brown skin this may be easier to see on the palms of the hands or the soles of the feet), becoming suddenly very confused, drowsy or dizzy, or fainting and not being able to be woken, since this can be a severe allergic reaction, anaphylaxis, which can follow a dose of any medicine
• Vomiting blood, or bleeding from the back passage that is heavy or will not stop, most of all with faintness, confusion or pain in the abdomen, or vomit that is black or dark brown, since a stomach ulcer on prednisolone can bleed
• Serious harm you have already done to yourself, such as an overdose, or a feeling that you may be about to harm yourself, since you need help to keep you safe now

Any of these needs an assessment that is urgent, on the same day, from your GP, your rheumatology team or NHS 111:

• In pregnancy, any bleeding, stomach pain that is severe or does not go away after a rest, reduced baby movements, a severe headache or visual disturbance, sudden swelling of the face, hands, legs or feet, or breathlessness that comes on suddenly, or when you lie down, or with dizziness: contact your midwife or maternity unit straight away, whatever the time; bleeding that is heavy, or that comes with severe pain in the tummy, pain in the shoulder, or feeling sick, faint or dizzy, or passing out, is a 999 or A&E emergency: call 999 and do not drive yourself to A&E; pain in the abdomen or back that comes on suddenly and severely is a 999 or A&E emergency, as the first list says
• A high temperature in pregnancy, whatever medicines you are taking, since a fever can be a sign of an infection that needs checking; your midwife or maternity unit can advise
• A fever, or feeling generally unwell, on immunosuppressant, biologic or steroid treatment, since an infection has to be treated early
• A joint that is hot and swollen, with a fever or feeling unwell, since an infected joint has to be ruled out at once, at A&E or through NHS 111
• A joint that has become hot and very swollen suddenly, or is worsening quickly, even without a fever, since an infected joint does not always announce itself with one; a joint that will take no weight at all, or that cannot be moved, is a 999 or A&E emergency, whether or not there is a fever
• A calf that is swollen, hot or painful, or a limb that is painful, swollen or discoloured, which can mean a clot; with breathlessness, chest pain, palpitations or feeling faint, this is a 999 or A&E emergency: call 999 and do not drive yourself to A&E
• New chest pain, new palpitations, or breathlessness that is new or getting worse; palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, belong to the first list, and so does any chest pain on sulfasalazine; in pregnancy, breathlessness that comes on suddenly, or when you lie down, or with dizziness, is for your midwife or maternity unit straight away, as the pregnancy line above says
• A new red, painful eye, or sight that has blurred, dimmed or changed, which needs an eye casualty or urgent eye clinic the same day, as does an eye that light hurts; in pregnancy, any change in sight, blurring or flashing lights among them, is also for your midwife or maternity unit straight away, as the pregnancy line above says, since it can be a sign of pre-eclampsia
• Thoughts of ending your life or of hurting yourself, or harm you have done to yourself that is not serious, short of the line in the first list, which steroids can bring on: ask your GP to see you that day or call NHS 111, and Samaritans answer at any hour on 116 123
• A marked change in mood or behaviour, confusion, or seeing or hearing things that are not there, on steroid treatment, since prednisolone can do this, the more so the higher the dose; confusion that comes on suddenly is a 999 or A&E emergency, as the first list says, and so, after more than a few weeks on steroid tablets, or repeated courses or injections in the past year, is becoming very drowsy or confused during an illness or after an injury
• Unusual thirst or hunger, passing urine more often, or feeling sleepy or confused, on steroids, or swelling of the arms or legs, bruising or bleeding that is not normal, black or dark red stools, severe stomach pain, severe back pain, a severe upset stomach, being sick, or very bad dizziness or passing out, since each can be a steroid effect that needs checking without delay; pain in the abdomen or back that comes on suddenly and severely is a 999 or A&E emergency, as the first list says, and so, after more than a few weeks on steroid tablets, or repeated courses or injections in the past year, is vomiting that will not let your tablets stay down, or, during an illness or after an injury, becoming very drowsy or confused, or fainting; in pregnancy, bleeding that is not normal, and stomach pain that is severe, belong to the pregnancy line above
• Contact with measles, chickenpox or shingles, whatever medicines you are taking, since measles and chickenpox can be dangerous in pregnancy as well as on steroids, and if you take steroids, a medicine to protect you may be needed; in pregnancy, contact with any of them is also for your midwife or maternity unit, or your GP, straight away, as the line below on a rash in pregnancy says
• Being near someone with measles, chickenpox or shingles, while you take a medicine that weakens the immune system, since measles and chickenpox can be dangerous when the immune system is weakened, and you can catch chickenpox from someone with shingles if you have never had chickenpox; NHS 111 can tell you what to do that day
• In pregnancy, a new rash, whatever you take its cause to be, or contact with someone who has an illness with a rash, chickenpox, rubella (German measles), measles and slapped cheek syndrome among them, since some of these infections can harm an unborn baby: ring your midwife or maternity unit, or your GP, straight away; with a rash, keep out of antenatal clinics and maternity units until you have been assessed, so that no other pregnant woman is put at risk; a rash that does not fade when you press it, with a fever or feeling unwell, and a rash that spreads across the body, or skin that blisters or peels, belong to the first list

A pregnancy that has begun while you are taking a medicine that is unsafe in pregnancy, methotrexate, leflunomide or mycophenolate among them, is a reason to contact your rheumatology team without delay: the team will tell you whether to take the next dose and what happens to the rest of your treatment. A flare in which no joint is hot or changing fast, during the pregnancy or after the birth, is also a matter for your team promptly, under the plan you agreed, without waiting for a routine slot; a question about a medicine, or a plan that needs revisiting, can go to the next planned review. If you take methotrexate, another DMARD, a steroid, a biologic or a JAK inhibitor, the warning signs that belong to each are set out in our guides to methotrexate, DMARDs, steroids and biologics and JAK inhibitors. If you cannot tell how urgent something is, asking is never a mistake.

Properly planned and properly looked after, most pregnancies in women with inflammatory arthritis, and many in women with an autoimmune condition, turn out healthy. An early start on planning leaves room for everything: getting the condition settled, picking medicines that suit, arranging the monitoring. If pregnancy is somewhere in your thoughts, now or in years to come, and you have inflammatory arthritis or an autoimmune condition, a pre-pregnancy review is a good first step.

Do all my medicines have to stop in pregnancy?

No. Uncontrolled inflammation carries risks of its own, so going untreated is not the safe option; the aim is to keep it under control on medicines that suit pregnancy. Hydroxychloroquine can go on, and so can sulfasalazine, azathioprine and several of the anti-TNF biologics. A small number need swapping for a safer option before conception. What suits you is decided between you, your rheumatology team and your maternity team.

What should happen if I take methotrexate and want a baby?

Because methotrexate is unsafe in pregnancy it is stopped before you start trying; the minimum gap in the UK rheumatology guideline is one month and many teams advise three, and a pregnancy-compatible medicine, with folic acid, takes its place. Never stop or change it by yourself: your rheumatology team plans with you when to stop and what to take instead. Should there be any chance that you are already pregnant on it, your team needs to know without delay.

Does pregnancy make arthritis better or worse?

No one answer covers everyone; the condition matters, and so does the person. Pregnancy eases rheumatoid arthritis for many women, but a flare is common in the first few months after the baby arrives. With axial spondyloarthritis the course cannot be predicted: it may get better, carry on as before or worsen. With a plan already made, a flare gets prompt treatment from your team whenever it arrives.

Is breastfeeding possible on these medicines?

Often, yes. Breastfeeding is considered compatible with hydroxychloroquine, sulfasalazine, azathioprine, prednisolone and the anti-TNF biologics. Methotrexate is among the few that are not recommended. Which applies to you is for your team to confirm, with your baby in mind.

Can I have a healthy pregnancy with lupus or antiphospholipid syndrome?

Yes. Many do, given planning and close monitoring. During pregnancy, antiphospholipid syndrome is usually treated with low-dose aspirin and heparin injections, and that makes a successful outcome far likelier. With lupus, the aim is to plan the pregnancy for a settled phase, usually keeping hydroxychloroquine going. In both, rheumatology and obstetric teams share the care.