MS is most often diagnosed between the ages of 20-40, the age at which many people may be thinking of starting, or extending, their family.
For most women, multiple sclerosis does not make any significant difference to their pregnancy.
A pregnancy is not automatically high-risk, just because the mother has MS. Having MS in itself should not limit your birth options, although you may have symptoms or disability that could affect your options.
If you have MS you are no more likely to experience a miscarriage or birth defects in your baby than a woman who does not have MS. If you have relapsing remitting MS, you are less likely to have a relapse during pregnancy, although the risk of relapse does increase in the six months after the birth of your baby. This is thought to be due to changes in the levels of hormones, particularly oestrogen, during and after pregnancy.
After the period of higher risk following the birth, the number of relapses will remain around the same as it would have been if you had not been pregnant. Despite the fluctuation in the relapse rate, research has shown that pregnancy has no adverse effect on multiple sclerosis in the long-term and that it does not influence the risk of secondary progression in MS.
There is not enough data on pregnancy in women with progressive MS to give an accurate indication of its effect on this type of multiple sclerosis.
A number of medications for MS, both disease modifying treatments and those for individual symptoms, are not recommended for use by women during pregnancy or when breastfeeding. If you are planning a family, or find you are pregnant, you should discuss your medications with your MS nurse or doctor.
New guidelines for pregnancy in multiple sclerosis were published in January 2019. Your health team should be aware of these recommendations for your care and treatment before, during and after pregnancy, but do draw their attention to the consensus guidelines if necessary.
The UK MS Register is carrying out research to try and build a picture of what it is like to be pregnant with MS, to try to improve things for women in the future. If you're pregnant and have MS, you're invited to join the UK MS Pregnancy Register if you would like to take part in this study.
Will MS affect my chances of conceiving?
There is no evidence that MS has a direct effect on fertility. This means that if you have MS you have as good a chance of conceiving with your partner as a couple without MS.
However, some people do experience sexual difficulties as a result of their MS. For example, erectile dysfunction in men, or a reduction in libido for women. These can impact on your sexual relationship and so on your chances of conceiving a baby. The MS Trust’s publications, Sexuality and MS: a guide for women and Sex and MS: a guide for men, explore some of the issues.
Although they can be sensitive topics to discuss, sexual difficulties can be addressed and managed. All health professionals should understand that MS frequently has an impact on sexual activity. Your MS nurse or GP, are good points of contact and can work with you to find strategies to help. They can also refer you to a specialist if necessary.
In the general population, one in seven couples may have difficulty conceiving. Some treatments for infertility may increase the activity of your MS. Discuss the pros and cons of any treatment with your health care team in advance.
Should I stop taking medication when trying to conceive?
The most recent ABN guidelines for the management of pregnancy in people with MS recommend that you should not delay starting disease modifying drug (DMD) treatment until after you have completed your family. Early treatment can prevent long term disability in MS, so starting a DMD as soon as you can could prevent irreversible disability later in life.
If you are of child-bearing age, or think you may wish to start a family in the future, you should consider carefully which DMD to choose. The different DMDs vary in how they might affect a baby during pregnancy, and some require a wash-out period before attempting to conceive. However, conception can be unpredictable and take many months to achieve, so stopping a DMD before starting to try for a baby could expose you to higher risk of relapse. Do discuss this issue proactively with your MS team.
No disease modifying drug (DMD) is proven to be safe during pregnancy, however there is increasing evidence that some are less risky than others. There is a growing body of evidence to suggest that exposure to the beta interferon drugs or glatiramer acetate (eg Avonex, Betaferon, Rebif, Extavia or Copaxone), does not change the overall risk to the pregnant woman or baby. In some cases, a neurologist may suggest that you remain on disease modifying drug therapy until you conceive, or even throughout your pregnancy, but this is very much a decision that should be taken in partnership having fully explored the risks and benefits.
For prospective fathers with MS, studies have shown no impact of having MS on the health of the baby. One study looked at babies fathered by men who were taking a beta interferon or glatiramer acetate as their DMD, and showed no risk to the baby's health. There is less information about the risks of other DMDs. Aubagio is detected in semen, this therapy should be discontinued before trying to conceive. If you are a man taking any of the disease modifying drugs and trying for a baby you should discuss this with your MS nurse or neurologist.
Other drugs used to treat MS symptoms, such as pain or spasticity might not be recommended during pregnancy. Some drugs may need to be tapered off slowly, rather than being stopped abruptly, to avoid withdrawal symptoms. Sometimes alternative medications can be explored to manage your symptoms throughout pregnancy. Discussion with your MS team about the pros and cons of any symptom management during this time is really important.
What happens if I get pregnant while I'm taking medication?
If you become pregnant while taking medication it is important to contact your MS nurse or neurologist as soon as possible. You can then consider how best to stop medication as again some drugs may need to be reduced gradually to prevent unpleasant withdrawal symptoms for both mother and baby.
You may be invited to enrol in a pregnancy exposure register. This is a study that collects health information from women who take medicines when they are pregnant or breastfeeding. Information is also collected on the newborn baby. This information is then compared with women who have not taken medicine during pregnancy. Because medicines can’t be tested in pregnant women, there is little information about how they could affect a woman or her baby. Pregnancy registries are the best way to capture data, so that in the future, women and their MS teams can better balance the pros and cons of treatment during pregnancy.
Will MS affect my pregnancy or baby?
The majority of all pregnancies are normal and low-risk, and are managed by a combination of your GP and community midwife. Having MS does not significantly increase the risk of you having problems during pregnancy. However, some maternity services may offer specialist clinics, for example for women with neurological conditions, so it is worth asking your MS nurse or midwife if this is available where you are.
Researchers analysed a large US database containing information about pregnancies and deliveries in women with MS, epilepsy or diabetes mellitus and the general healthy population. Aside from a slightly higher risk of low birth weight babies and caesarean delivery, MS was not associated with an elevated risk for any of the other pregnancy complications.
Is my baby at risk of getting MS themselves?
Most people who develop MS have no previous family history of the condition. However, having a relative with MS does increase your chance of being diagnosed with MS, although the risk remains low.
In the UK, the risk for a member of the general population being diagnosed with MS in their lifetime is about 1 in 330. First degree relatives, such as the child of someone with MS are estimated to have a 1 in 48 risk of developing MS (equivalent to approximately 2%, or two out of 100 children born to people with MS). For second degree relatives (grandparents, cousins, aunts/uncles, nephews/nieces) it is around 1 in 100.
Although the chances of your children getting MS are low, it makes sense to avoid the known risk factors. To give your children the best chance of avoiding MS themselves, ensure that you are not deficient in vitamin D while you are pregnant, and give them vitamin D supplements as recommended by your doctor. You should also avoid exposing children to cigarette smoke either before birth or during childhood.
Can I take medication while I'm pregnant?
Steroids carry some risks and so some people prefer to avoid them during pregnancy. However, current guidelines state that steroids are safe to use to treat relapses during pregnancy.
Will pregnancy affect my MS?
Most women with MS feel well during their pregnancies, and experience no new problems. However, some symptoms that occur in MS also occur in pregnancy, and it may be difficult to distinguish the cause.
- Fatigue is often a problem in early pregnancy and so you may think that your MS fatigue has got worse.
- Heat sensitivity may also increase during pregnancy, which may make fatigue worse.
- Women often find that they don’t sleep as well during pregnancy, further contributing to increased fatigue.
- Bladder symptoms such as frequency and urgency can temporarily increase because of pressure on the bladder from the uterus. Long term, there is no difference in bladder problems between women with MS who have had children compared with those who have never given birth.
- It is also important to be vigilant about urinary tract infections, which can be more prevalent in pregnancy and affect your MS symptoms.
- Mobility problems can worsen in late pregnancy due to the increasing weight of the baby and changes in posture.
Women’s experiences of pregnancy are highly variable and any new or worsening symptoms should be discussed with your midwife, GP or MS nurse.
How will pregnancy affect my relapses?
Overall, relapse rate has been found to be similar during the pregnancy twelve months (nine months of pregnancy and three months following the birth) as in a non-pregnancy year. There is usually a reduction in relapse rate during pregnancy, particularly in the last three months but an increase in relapse rate in the three months following the birth.
One study tracked 227 women for a year before and through pregnancy and for up to two years after the baby was born. It showed that relapse rates during the early months of pregnancy are unlikely to be very different from what they were previously. However, relapses during the last trimester (months seven to nine) fell markedly. In the first three months following birth, the relapse rate increased to almost one and a half times the average rate of relapses experienced in the last pre-pregnancy year. However, 72% of women on the study did not experience a relapse in that period. The relapse rate remained at a slightly higher level than in the pre-pregnancy period for up to nine months following the birth, but then tapered off to previous levels.
It is thought that relapse rate is reduced during late pregnancy because of the effect of pregnancy hormones which suppress the immune system to ensure that the body will carry a growing baby without rejecting it. Relapse rate after birth may increase because of hormonal disturbances, but there is no consensus about this. Overall, taking pregnancy and the year following birth as a whole, researchers consider that the number of relapses will remain around the same as it would be if there had not been a pregnancy.
It is difficult to predict how severe any relapse that you might experience during pregnancy might be, but as far as is known relapses do not affect the baby. Do let your MS nurse or consultant know if you do have a relapse whether it is severe or not.
What impact will pregnancy have on the course of my MS?
There has been limited research into the long-term effects of childbirth on the course of MS. However, the research that exists suggests that pregnancy and childbirth are associated with less long term disability. A Belgian study looked at 330 women over 18 years, and showed that women who have given birth at any time (either before or after the onset of MS) were 34% less likely to reach EDSS 6. This is the point of being unable to walk without a walking aid.
No impact on the long-term course of MS or likelihood of transitioning to secondary progressive MS has been found. As yet no studies have explored pregnancy in primary progressive MS.
Does pregnancy have an impact on relapse rate?
Consultant neurologist Ruth Dobson discusses whether women with MS can go into remission during pregnancy and if relapses are more likely after the birth.
Do I need extra support after the birth?
Once your baby is born, your community midwife can look after you for up to 21 days, but normally less. Care is then transferred to a health visitor, who has a duty to monitor the general health and wellbeing of the whole family, not just the baby. If at all possible, try to meet your health visitor before the baby is born. Your GP is also responsible for monitoring both mother and baby for around six weeks after the birth.
There is an increased risk of post-natal depression in both new mothers and new fathers with MS. Your MS service and pregnancy health team should be aware of this, make you aware of the symptoms and help you make plans to get support if you need it.
Before the baby is born, make plans and speak to the friends or family members who might be able to help. If you do not have family or a friendship network nearby, speak to social services, your health visitor or Home Start. They may be able to organise extra help for you. Getting this arranged in advance of the birth will help you feel confident and relaxed.
Many new parents find that friends and family offer help immediately after the birth. They may offer help with meals, household tasks or with caring for other children in the family. However, you may find that you will need help at other times, and for up to a year after the birth. The increased risk of relapse after birth lasts for around 6-9 months, so do think about what you would do and who you could call on for help if you were incapacitated by a relapse.
One research study found that having help available for the whole of the first year reduced the number and impact of symptoms that a new mother with MS experiences and increases her ability to function normally. While this may not be feasible for everyone, developing a network of potential helpers who may be available at short notice may be useful.
Where can I find support?
It is easy for anyone to feel isolated when caring for a very small baby. Many people find it helpful to speak to other parents in a similar situation. Antenatal classes for first-time parents are provided by the NHS and groups such as the National Childbirth Trust. Attending these classes will introduce you to other local families with small babies.
Your MS nurse may know of groups in the local area for new parents with MS, or be able to put you in touch with another family with young children. Health visitors may run a local clinic or drop-in service where you will meet other new parents.
Other useful links:
- muMS UK - an online group who discuss all aspects of pregnancy and parenting, and for those who are thinking of starting a family
- MS Trust Facebook group - a moderated online community of people with MS
- La Leche League - independent support and information for breastfeeding women
- Breastfeeding Network. - independent support and information for breastfeeding women
- Cry-sis - support for families with excessively crying, sleepless and demanding babies.
- Disabilty, Pregnancy and Parenthood Information- useful information and personal experiences for those embarking on parenting with a disability.
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