New UK guidelines for pregnancy in multiple sclerosis


7 February 2019

The study in brief

MS is usually diagnosed between the ages of 20-40, the age at which many people will be thinking of starting or adding to their family. Getting advice on family planning, pregnancy and childbirth, particularly in relation to the disease modifying drugs, is going to be important.

As there is limited evidence to guide these conversations, the MS Trust and a group of experienced health professionals have developed guidelines to support discussions between health professionals and people with MS.

A working group made up of MS specialist nurses, neurologists, obstetricians and midwives reviewed evidence from published peer-reviewed research, drug-specific pregnancy registers and clinical experience. A set of statements were drawn up which were further refined by the working group and endorsed by the Association of British Neurologists.

The guidelines cover contraception, conception, managing MS during pregnancy, delivery and anaesthetic options, and breastfeeding. They recommend that women should not delay starting disease modifying drugs because they wish to have children in the future and should not stop taking medicines when they become pregnant, but should contact their MS team as soon as possible for advice. Specific recommendations are given on risks and benefits of taking each of the disease modifying drugs during pregnancy and when breastfeeding.

The study in more detail

Background

MS is usually diagnosed between the ages of 20-40, the age at which many people will be thinking of starting or adding to their family, so getting advice on issues relating to family planning, pregnancy and childbirth is going to be important. With a greater emphasis on starting disease modifying drugs (DMDs) as early as possible after diagnosis, people also want to know about the risks and benefits of taking these drugs around the time of conception, during pregnancy and after childbirth.

As there is limited evidence available to guide these conversations, the MS Trust and a group of experienced health professionals set out to develop guidelines to support discussions between health professionals and people with MS.

How this study was carried out

A working group made up of MS specialist nurses, neurologists, obstetricians and midwives met to review evidence from published peer-reviewed research, drug-specific pregnancy registers and clinical experience. These discussions were summarised as a set of statements which members of the working group and two people with MS were asked to score according to whether they strongly agreed, agreed, were neutral, disagreed or strongly disagreed. Statements were revised and circulated to the working group for a second round of scoring. Consensus was judged to have been reached if 80% of the group scored that they strongly agreed or agreed with a statement. Finally, the statements were reviewed by the Association of British Neurologists and their feedback incorporated into the published guidelines.

What was found

The guidelines make recommendations covering contraception, conception, managing MS during pregnancy, delivery and anaesthetic options, and breastfeeding.

The guidelines recommend that women should not delay starting disease modifying drugs (DMDs) because they wish to have children in the future and should not stop taking medicines when they become pregnant, but should contact their MS team as soon as possible for advice. Specific recommendations are given on risks and benefits of taking each of the disease modifying drugs during pregnancy and when breastfeeding.

Other points made in the guidelines include:

  • relapses become less frequent during pregnancy, so many women choose to stop disease modifying drugs when they become pregnant. For those with very active MS, treatment throughout pregnancy should be considered
  • steroids can be taken during pregnancy and while breastfeeding if required
  • having MS does not automatically make pregnancy high risk and should not automatically limit options for delivery or choices of anaesthesia.

These guidelines do not cover the risks and benefits of taking drugs for MS symptoms such as nerve pain, but the working group plans to develop guidelines for these in the future. In the meantime, they note that guidelines for symptom treatments drawn up for the general population should be apply equally to people with MS.

What does it mean?

These guidelines are very welcome as they give clear and expert advice for pregnant and breastfeeding women with MS, and for couples affected by MS who are planning a pregnancy. The clear recommendations, based on published evidence, drug pregnancy registers and clinical expertise, will inform and support discussions between people with MS and health professionals.

Information on the safety of medicines in pregnancy is constantly evolving and being updated as new data becomes available. The authors of the guidelines suggest that a pregnancy register for all women with MS who become pregnant, gathering data on medicines taken during pregnancy, would provide valuable additional evidence in the same way that an epilepsy pregnancy register has improved decision making about treatments for women with epilepsy.

Dobson R, Dassan P, Roberts M, et al.
UK consensus on pregnancy in multiple sclerosis: 'Association of British Neurologists' guidelines.
Practical Neurology 2019; Jan 5. [Epub ahead of print]
Abstract - PubMed website
Read the full guidelines - BMJ website

More about conception, pregnancy and childbirth

You can read more about pregnancy and parenthood in our A-Z of MS and about the disease modifying drugs in MS Decisions.

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