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.
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, Sex 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.
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 (e.g. 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.
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.