Already pregnant or just starting to think about pregnancy? Becoming a parent is one of the most exciting and overwhelming times in most people’s lives. But even more so if you, or your partner, has arthritis.

 

I have arthritis…is having a family possible?

Absolutely. It might require extra planning and patience, or not be quite as you pictured it, but becoming a parent is usually possible if you have arthritis.

The journey to parenthood can be uncertain and demanding, often both physically and emotionally, and sometimes more so if you are living with arthritis. Living with joint pain and other symptoms can make it challenging to care for a new baby or an active toddler. However, with proper planning and medical care, most people with arthritis can have safe, successful pregnancies and become loving, capable parents.

 

The first step on the path towards parenthood is to discuss your family plans with your rheumatology team before you start trying for a baby.

 

Does having arthritis make it harder to fall pregnant?

Conceiving a baby may take longer if you, or your partner, have arthritis but experts are not exactly sure how or why. Studies have shown that women with rheumatoid arthritis do take longer to conceive, often longer than 12 months. Experts aren’t sure why this is the case. It could be due to the disease itself or some arthritis medications, such as anti-inflammatory medications. Other factors such as lower sex drive due to fatigue and pain might also play a role.

It is estimated that as many as one in six couples in the Australian population have trouble conceiving, so if this is an issue for you, you are definitely not alone. The good news is that advances in medicine and science have made treatments for fertility challenges more effective.

If you have any concerns about your fertility, speak to your GP or rheumatologist who can refer you to a fertility specialist to improve your chances of getting pregnant. It can be a lonely, emotionally draining experience if it’s taking longer than you had hoped to fall pregnant, especially if you have ceased some of your medications in order to conceive safely.

 

Is there an increased risk of miscarriage or problems during pregnancy if I have arthritis?

Most studies have found that the rates of miscarriage for women with rheumatoid arthritis are no different from rates for women without arthritis.

There is also no increased risk of miscarriage if the father has arthritis. Most types of arthritis that are well controlled don’t increase the risk of complications during pregnancy or cause harm to the unborn baby.

Highly active, or poorly controlled, arthritis can cause risks for both you and your unborn baby, so it is vital to work with your rheumatology team to find a management plan that works for you, preferably before you conceive.

 

Can arthritis be passed on to my unborn baby?

For most types of arthritis, the chance of your child having arthritis is low. Even though some types of arthritis appear to run in families, there are many other factors involved other than just the genes your baby inherits from you and your partner.

If you are worried, it’s a good idea to talk to your rheumatologist for more specific information about your particular type of arthritis.

 

We want to start a family – what do I need to consider?

Get the right advice – see your rheumatologist before planning for a baby. Some of the medications used to treat arthritis can be taken safely before and throughout pregnancy. Some can be used at certain times during pregnancy. Others are harmful to a growing baby so shouldn’t be used during pregnancy. Some medications remain in your body for many months after you stop taking them so you may need to wait a while before trying to conceive. Other medications may need to be 'washed out' so you may have to take additional pills for that. 

For men, the impact of arthritis medications causing problems with fertility is minimal. Most are safe and compatible with pregnancy and should not be stopped when trying to conceive. 

If you or your partner has arthritis, make it a priority to talk to your rheumatologist at least six to twelve months before you start trying to conceive.

Your rheumatologist can give you advice about the safest combination of medicines to continue taking during conception and pregnancy, other treatments you could use while trying to conceive, and which medicines should be stopped before conception (and when you should stop them).

Suddenly stopping your medications could make your arthritis worse, which can cause health problems for both you and your baby. Always talk to your rheumatologist before you stop taking any of your arthritis medications. Remember, there are many arthritis medications that can be safely used before and during pregnancy.

It is also important to let your rheumatologist know when you have a flare too. Flares or active arthritis in pregnancy can lead to poorer outcomes and may affect your baby's capacity to thrive in your womb. So expedient management of flares is essential.

As with all couples planning pregnancy, the same advice applies, which is to stop smoking and avoid recreational drugs to reduce the risk of harm to your baby. Eat a healthy balanced diet with plenty of leafy green vegetables, lose any extra body weight, start taking a folic acid supplement and lead a healthy lifestyle to further boost your chances of a healthy pregnancy. 

 

Questions for your healthcare team

Here are some things to discuss with your healthcare team, such as your rheumatologist, rheumatology nurse and GP before you start trying to conceive:

1. Are there any medications in my treatment plan that I should stop taking while I’m trying to fall pregnant or when I am pregnant? If there are medications that are not compatible with pregnancy, then ask the team:

• If you are a woman carrying the baby, then you may also need to wait after stopping certain medications; for example, methotrexate needs to be stopped at least three months before trying to conceive.
• Other commonly used arthritis medications that are not compatible with pregnancy will include leflunomide. This does not mean you are not able to become pregnant, it just means pregnancy has to be planned. This means changing some of your medications and perhaps you may need to 'wash out' these medications before you can conceive.
• While you are on methotrexate and leflunomide or have very active rheumatoid arthritis, you need to consider long-acting reliable contraception, so that you do not accidentally conceive. 
• How long should I stop taking the medication(s) before I start trying for a baby?
• Will I need to take something to wash it out?
• What are my other options to help manage my symptoms if I can’t take my usual medication?
• What can I do if I have a flare?
• How will pregnancy affect my arthritis?
• And how will my arthritis affect pregnancy and the baby?

 

2. Are there any medications for arthritis that are safe to continue while I’m trying for a baby, and during pregnancy? Are there any additional supplements that I may need in pregnancy due to my arthritis?

3. Do I need any vaccinations before trying for a baby, or if my medications are changing?

4. Should I be taking any supplements before trying to fall pregnant?

5. When would be the best time for my partner and I to start trying for a baby?

6. What is the best type of contraception we should be using while we’re waiting to conceive?

7. Are there any tests I need before trying to conceive?

Your medical team should be able to work with you to come up with a treatment plan that protects the health of your unborn baby, while also keeping your arthritis under control. Be mindful that treatment plans may need to change, or you may need to try a range of different medications to find the right treatment for you during this period.

If you find it hard to talk openly and honestly with your doctor about your options or concerns, write down your questions before the appointment. You can also consider seeking a second opinion from another rheumatologist with a special interest in pregnancy.

 

Does it matter how active my arthritis is before I conceive?

You might be eager to start a family, but your rheumatologist only wants to talk about how to get your arthritis under better control. Why does it matter whether your arthritis is active if you’re trying to conceive? Conceiving while your arthritis is not well controlled or highly active can cause risks for both you and your unborn baby.

Having your arthritis well controlled may:

• Make it easier for you to conceive.
• Reduce your chance of requiring surgical intervention to deliver your baby.
• Reduce the chance of your baby being born prematurely or having a low birth weight.
• Prevent permanent joint damage and disability to you.

It is vital to work with your rheumatology team to find a plan that works for you and puts you on the path to a healthy (and normal) pregnancy and well grown baby.

 

What about men with arthritis?

If you are a man with arthritis and you are thinking about starting a family, the process is much simpler! The baby does not grow in you, so most medications can be continued without problems. Some medications (sulfasalazine) can reduce your sperm count, although this is usually reversed when you stop taking them. It is important to know the cause of your subfertility before stopping your medications as there are many reasons for not conceiving.

If you are one of the rare men on cyclophoshamide, ask your specialist about sperm banking before you start taking it.

 

Talk to your rheumatologist at least six to twelve months before you and your partner plan to conceive.

Your rheumatologist can give you advice about the best treatment plan to follow before conceiving. Be vigilant with contraception to prevent unplanned pregnancies until you are ready to conceive.

 

When is the best time to start trying for a baby?

The best time to start trying for a baby is when your arthritis is well controlled or stable. While you might get a sense of this yourself from monitoring your own symptoms, it is important you discuss with your rheumatologist whether your arthritis is stable.

If your arthritis is not well controlled, you may find it harder to conceive and there can be risks for both you and your unborn baby. Talk to your rheumatologist about the best management plan that will give you the best chance of achieving your goal of becoming a parent while also protecting the health of you and your baby.

You may also need to wait after stopping certain medications; for example, methotrexate needs to be stopped at least three months before trying to conceive.

Stop smoking and avoid recreational drugs to reduce the risk of harm to your baby. Eat a healthy balanced diet, lose any extra body weight, start taking a folic acid supplement and lead a healthy lifestyle to further boost your chances of a healthy pregnancy.

 

What is the current evidence about medication safety for pregnancy and breastfeeding?

If you are planning a pregnancy, it is vital to get an expert opinion from your rheumatologist about your medications as early as possible. Some arthritis medications are safe to continue before and during pregnancy. Other medications may need to be stopped as they may increase the risk of miscarriage or cause harm to a developing baby. Your rheumatologist will work with you to find the right arthritis management plan for both your health and the health of your unborn baby.

The current evidence about the safety of arthritis medications is summarised on the below table. This is a general guide only. New information is being discovered regularly and advice may be updated. Use this table to discuss your medications with your rheumatologist and always follow their expert advice.

 

Unplanned pregnancy

If you, or your partner, have fallen pregnant unexpectedly, call your rheumatologist or treating doctor immediately.

If you are taking any of the medications from the "Not safe" column in the table below, stop taking them as soon as you find out you are pregnant and contact your doctors.

If you are taking any of the medications from the "Generally safe" or "May be safe" columns in the table below, continue taking them as usual. Do not stop taking these medications without first talking to your rheumatologist and getting the right advice.

 

* Some TNF inhibitors are recommended to be stopped in the later parts of pregnancy. Talk to your rheumatologist for more information. If your arthritis is very well controlled, some medications could be withheld towards the end of your pregnancy so that less of it gets through to your baby. Discontinuing your medications in late pregnancy will have to be carefully weighed against your disease activity and lack of medications to successfully manage a flare in late pregnancy. Each case will need to be an individualised decision with your rheumatologist (or obstetric physician). 

 

Pregnancy and arthritis – what can I expect when expecting?

The day you’d been hoping for has arrived…you’ve had a positive pregnancy test and you are now taking your first steps towards parenthood. Congratulations!

 

How will I feel during pregnancy?

The greatest myth of pregnancy… the pregnancy glow!

How your body will respond to pregnancy, and how you will feel during the next nine months, will be different for everyone. Every woman is unique, and every woman’s pregnancy is also unique.

Some women sail through pregnancy and even find that their arthritis symptoms go into remission (their symptoms improve or completely disappear) during pregnancy. Unfortunately, this myth is untrue for the majority for most mothers-to-be. Hence why stopping medications while planning pregnancy is not a good idea. 

However, the pregnancy ‘glow’ that fills our newsfeed is a myth for many women, even without arthritis. Pregnancy can bring with it many unpleasant symptoms, which can be even more challenging if you have arthritis.

 

Pregnancy and arthritis remission

During pregnancy, your immune system goes through some changes to allow your baby to grow and develop.

For some women with arthritis, these changes to the immune system also bring a benefit of reducing the activity of their arthritis. However, this is probably only true for a third of women with rheumatoid arthritis will find that their symptoms, such as pain, stiffness and flares, improve during pregnancy.

The majority of women with arthritis will continue to have active disease during their pregnancy. You may even find that your symptoms worsen, or you have disease flares, particularly if you’ve had to stop or change medications.

If you have a flare, you will need to let your rheumatologist know so that it can be expediently managed. Studies have shown that women who have active inflammatory arthritis in pregnancy have worse outcomes for both themselves and their babies. There are medications that can be used in pregnancy to treat a flare, and the plan for its management will be tailored to your gestation and severity of your flare.

If you are taking additional medications for a flare, please ensure you discuss this with your midwife or obstetrician so that they are aware. You may need additional scans and care in pregnancy and around delivery if this occurs. 

 

Physical effects of pregnancy

Pregnancy brings with it many physical changes to your body. If you are living with arthritis, some of these changes may even make your arthritis symptoms feel worse. Here are some common symptoms in pregnancy and tips for managing them:

 

 

Emotional health during pregnancy

Pregnancy can have a powerful effect on your mood, thoughts and emotions. Changes in your hormone levels can leave you feeling like you’re on an emotional rollercoaster at times, not to mention the impact of possible morning sickness, physical changes and bone-crushing tiredness. Some emotional ‘ups and downs’ are a normal part of pregnancy. However, if are feeling constantly sad, worried, scared or nervous, thinking negative thoughts about yourself, or are finding it difficult to sleep, eat or do the usual activities in your life, seek support.

 

Changes in your hormone levels can leave you feeling like you’re on an emotional rollercoaster at times.

 

Talk to your GP or obstetrician about how you’re feeling, and they can suggest the best treatment options. 

 

Labour and delivery

Throughout your pregnancy, you will no doubt hear many birth stories – some good, some bad and others you would rather not have heard! As these stories reveal, each birth is unique and rarely are they perfectly what the parents imagined.

Towards the end of your pregnancy, talk to your rheumatologist, obstetrician and/or midwife to determine if your arthritis could impact upon your delivery.

As a rule of thumb, most women who are able to sit comfortably can deliver normally. There may be additional precautions necessary if you have had hip replacements or arthritis in your hips, but all this can be factored into your delivery planning.

Epidurals and regional pain relief are encouraged to help you manage your pain better.

In some cases, Caesarean sections may be necessary, but for the majority of women with inflammatory arthritis, the indications for a Caesarean section will be the same as for a normal population. 

Due to your arthritis, we usually advise against a prolonged pregnancy of more than 40 weeks. There is a higher risk of placental insufficiency, and therefore, delivery around 40 weeks is encouraged by most professionals.

 

Resuming your medications

If you have been advised to stop or withhold some of your medications towards the end of your pregnancy, now may be a good time to restart them!

If you have had a Caesarean section, then there may be a longer wait to restart your medications as the doctors will need to ensure your wound is healing well without signs of infection before restarting your medications. Usually, the time to restart your medications will be included in your medication plans, but if they haven't, please ensure this is discussed before you leave hospital. 

Post-partum flares are very common. So a good flare plan needs to be in place and some rheumatologists may choose to pre-emptively prescribe prednisone for you to keep at home so that it can be started in event of a flare. Starting prednisone before a flare is not advisable and potentially harmful to you too.

 

Life with a new baby

The arrival of your tiny bundle of joy will undoubtedly change your life forever. Caring for a new baby is equal parts exciting and exhausting for all new parents. And, as a parent with arthritis, you may even experience some additional challenges.

This is the time when mood changes hit and can be overwhelming. Post-partum depression and anxiety are more common in women with rheumatic diseases. So please reach out to your GP and start medications if necessary. 

 

Caring for a new baby

It is physically and emotionally demanding to care for a new baby, and even more so when you have arthritis either as a mum or dad. Here are a few tips that may help:

 

Nappy changing

• Have change stations set up in different parts of the house, with everything you may need to change your baby’s nappy, to make it easier if your mobility or ability to carry your baby is very limited.
• A change table on wheels may make it easy for you to move it around the house.
• Look for baby wipes and creams with easy-to-open lids.
• Ask someone to open the nappy packets for you or open them with scissors as they can be a challenge to get into with sore hands.
• Set up a changing table that is at a height where you don’t need to bend over or one where you can even sit while changing your baby’s nappy.
• While cloth nappies may be more environmentally friendly, disposables tend to be more absorbent, meaning you won’t need to change them as often. They will also save you a few extra loads of washing each week too. If using cloth nappies, look for ones with Velcro closures to make it quick and easy to change.

 

Bathing

• Look for baths that can be filled and drained in the sink or bathtub. Some baths come on trolleys that can be wheeled around.
• If you’re bathing your baby in a bathtub, look for supports or slings that they can lie on. Remember you will always need to closely supervise your baby in the bath.
• When your baby is very young, it might be easier to bathe him/her in the laundry trough/sink.

 

Cots, bassinets and highchairs

• Look for items that are easily height adjustable, lightweight and on wheels to make it easy to move them around the house.
• Test the clips, release mechanisms and brakes to ensure they are easy to use.

 

Dressing

• Look for clothing that is easy to put on and take off your baby, such as elastic waists and wide opening envelope necks. These will be easier on sore hands. Avoid snap closures, buttons and zips.
• Avoid socks and shoes for your baby if you have sore hands. Instead use jumpsuits that cover your baby’s feet.

 

Out and about

• Use a lightweight stroller or pram that is easy to fold, unfold and lift into your car. Test the harness to ensure it is easy to clip/unclip and adjust, and ensure the brakes are easy to use. Check the height of the handle and comfort for walking. A 15kg pram versus a 6kg pram may make all the difference. It’s worthwhile testing lots of different prams before you buy as sometimes the most expensive or popular ones are not necessarily the most user friendly.
• Use a pram caddy and baby bag to keep all your essentials close to hand when you are out. Try to keep your baby bag as light as possible. Consider using a backpack instead of a bag that sits on one shoulder or hang it off your pram.
• Try different baby carriers and slings to find one that can help you carry your baby without straining your hands, arms or shoulders.

 

Ask for, and accept, help

• Organise a network of supportive family and friends who can help you when you need it. This will be particularly important if you have a flare of your arthritis symptoms, or even just if you and your baby are having a bad day.
• New mothers without arthritis often need a support network too during the early months of life with a new baby.
• If you don’t have a support network of family and friends, investigate external help that may be available. Ask your obstetrician, midwife, community nurse or GP about support services that may be available in your area. Cleaners, nannies, au pairs, meal delivery services or other community-based supports in your area may be helpful.
• Make use of online shopping and home delivery services.

 

Listen to your body

• Pace yourself and be gentle with yourself. If you’re feeling exhausted, the house chores or tidying up can wait. Rest when your body is telling you it needs rest.
• Try to decide what tasks are a ‘must do’, what can wait and what can be outsourced to family, friends or hired help. Prioritise the tasks that absolutely need to get done as well as resting and enjoying your new baby. Don’t push yourself to get non-essential tasks done.
• Consider your own clothing; for example, can you manage clips on maternity bras and tops, or is a pull down/up version easier?

 

Taking care of yourself

• It can be a huge adjustment in the first days, weeks and months with your new baby.
• Most women experience ‘the baby blues’ in the first days after your baby is born. This is very normal and may make you feel teary, irritable and overly sensitive. The baby blues usually go away after a few days.
• If you’re feeling low in mood and energy, having trouble sleeping or eating, feeling scared, sad, hopeless or angry for more than two weeks, seek help.
• You can talk to your GP, child health nurse, your partner, friends and family. Getting the right support and treatment will help you manage post-natal depression and have you feeling better sooner.

 

Get advice from your healthcare team

• If you’re struggling to look after your baby because of pain or other symptoms, see your rheumatologist to talk about your treatment options.
• See a physiotherapist or occupational therapist for advice about looking after your joints and equipment that can make caring for your baby easier.
• Get advice from a child health nurse or lactation consultant for ways to make it easier to care for, and feed, your baby.

 

Breastfeeding and bottle feeding

New Zealand guidelines recommend exclusive breastfeeding for babies to around six months of age. Breastfeeding is then recommended to continue alongside suitable foods for infants until 12 months or age and beyond, for as long as the mother and child wish.

Whether to breastfeed or not, or for how long, is a very personal decision. Even mothers without arthritis can have issues that can prevent breastfeeding or make it very difficult.

There are usually no physical reasons that prevent women with arthritis from breastfeeding, apart from possible discomfort if you and your baby are not positioned correctly during feeding. You can get advice on this from your child health nurse or lactation consultant at your local hospital. The choice to either breast or bottle feed your baby will depend on many factors, such as your milk supply, your baby and the medications you are taking.

 

Breastfeeding and medications

Many arthritis medications are safe to take during breastfeeding as they do not pass into breast milk, or only in very low levels that are safe for the baby. A few like methotrexate and leflunomide can pass into your breast milk and may not be safe for your baby. Talk to your healthcare team, including your rheumatologist, about your plans for breastfeeding so that the best treatment plan, for both you and your baby, can be put into action when your baby is born.

See the table above for a summary of the safety of arthritis medications during breastfeeding.

 

Breastfeeding and joint pain

If you decide to breastfeed, here are some tips to make it more comfortable on your sore joints:

• Find a comfortable position. You might have a supportive chair at home already, or you might choose to invest in a breastfeeding chair, but make sure your neck and back are supported in a comfortable position. New babies feed all the time so make sure the chair is very comfortable as you will be spending a lot of your day (and night) in it. Some women find breastfeeding more comfortable lying on their side, so you may have to experiment with different positions before you find what works best for you.
• Breastfeeding pillows are a great way to support your baby, without putting strain on your hands, arms, shoulders and back.
• Seek advice from a lactation consultant or child health nurse if you are finding breastfeeding difficult or painful. They may be able to recommend a range of different equipment or aids that can make all the difference.

 

Bottle feeding and joint pain

Bottle feeding can also cause strain on sore arms, hands, necks and upper backs.

Here are some tips:

• Find a comfortable position. Make sure you sit in a comfortable chair that supports your neck and back. Use cushions or pillows to bring your baby to a height that’s comfortable for you to hold the bottle in their mouth.
• You could also try feeding your baby in a baby carrier, sling or rocker if it’s difficult holding your baby in your arms for long periods.
• Look for wider bottles that are more comfortable to hold in your hands.
• Ask your partner, family or friends who are visiting to help when they can.
• Consider asking for help if you can’t open the cans of formula or ask your partner to prepare the bottles if you’re going to be alone for a long period of time.
• Ask someone to help you with washing all the used bottles or use a steriliser or dishwasher to clean the bottles.

 

Post-natal flare

Just as you’re trying to cope with the sleep deprivation, and the physical and emotional demands of being a new mum, you might also have a flare of your arthritis symptoms.

Many women with arthritis find that their symptoms return or flare in the months after the baby is born. Post-natal flares are common, with studies suggesting up to 40% of women with rheumatoid arthritis experience a flare in the six months after giving birth.

A flare can make caring for your newborn very challenging. All the usual baby-care activities such as holding your baby during feeding, changing nappies, bathing, carrying and lifting your baby can be nearly impossible if you have severe joint pain and stiffness. You might also feel completely exhausted with arthritis-related fatigue on top of the sleep deprivation that comes with new babies.

 

It is a good idea to have an appointment booked with your rheumatology team four to six weeks after the birth.

 

If you notice your arthritis symptoms worsening in the weeks or months after the birth, get in touch with your rheumatologist straight away for advice about your treatment options and make an earlier appointment than planned. Some rheumatologists may have already empirically prescribed you some steroids to keep at home in the event of a flare, and you may just need to get in touch with them to decide the dose and duration of prednisone to be used. 

A physiotherapist, occupational therapist or child health nurse may also be able to give you some practical advice about how to look after your baby during a flare. Using a baby carrier/sling and other equipment can make caring for your baby easier on your joints. See the section below for some tips about caring for a new baby when you have arthritis.

Most importantly, plan to get extra help. Have a support crew of family and friends on call for extra help if your arthritis flares. Don’t be afraid to ask for help from your network during this time when you might be struggling with even the most basic tasks.

 

Seeking support

Who can help?

Rheumatologists are doctors who specialise in diseases of the joints. Your doctor will need to refer you to a rheumatologist. 

A rheumatology nurse, if available, can help you understand your treatments, provide support and refer you to other health professionals.

A physiotherapist (physio) can use various treatments to keep your joints as flexible, strong and pain-free as possible. They will also show you exercises and pain-relief techniques to use at home.

An occupational therapist (OT) can provide advice on how to care for your baby without putting strain on your joints, including suggesting equipment and aids that can help.

Talk to your GP if you are finding your feelings and emotions are getting in the way of enjoying your life. They can suggest ways to cope, recommend medications that can help or refer you to a psychologist who can help you work through your feelings. You may be eligible for a Mental Health Care Plan, via your GP, which will provide subsidised sessions. You can also see a psychologist without needing a referral.

Midwives will continue to provide you support and post-natal care for up to six weeks after delivery. They are a treasure trove of information, and may visit you in your home to see how you and baby are doing. 

Perinatal Anxiety and Depression Aotearoa supports women, men and families across New Zealand affected by anxiety and depression during pregnancy and early parenthood.

Child health nurses are a wealth of information and support as you learn to care for your new baby. Ask your obstetrician or midwife or contact your local community health centre to find out about services in your area.

Lactation consultants can help you with any problems you might have with breastfeeding. Find out if your local hospital or child health clinic provides this service, otherwise you can pay for a private consultation.

The Independent Living Centre has information about aids and devices that can help with day-to-day activities.

 

Useful resources

The web can be a useful source of information and support. However, not everyone who puts information on the web is a qualified health practitioner. Some organisations make unrealistic promises in order to sell their products. Treatment options and practices from overseas may also not be relevant or approved in New Zealand. Always check information from the web with a trusted member of your healthcare team.