You are here:

New UK guidelines for pregnancy in multiple sclerosis

Published on

Summary

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.


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 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
Read the full guidelines 

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.

Research by topic areas...

Carers

Petrikis P, Baldouma A, Katsanos AH, et al.
Quality of life and emotional strain in caregivers of patients with multiple sclerosis.
J Clin Neurol. 2019 Jan;15(1):77-83.
abstract
Read the full text of this paper

Causes of MS

Tarlinton RE, Khaibullin T, Granatov E, et al.
The interaction between viral and environmental risk factors in the pathogenesis of multiple sclerosis.
Int J Mol Sci. 2019 Jan 14;20(2). pii: E303.
abstract
Read the full text of this paper

Marrodan M, Alessandro L, Farez MF, et al.
The role of infections in multiple sclerosis.
Mult Scler. 2019 Jan 14:1352458518823940. [Epub ahead of print]
abstract

Co-existing conditions

Ahmed O, Geraldes R, DeLuca GC, et al.
Multiple sclerosis and the risk of systemic venous thrombosis: A systematic review.
Mult Scler Relat Disord. 2019 Jan;27:424-430.
abstract

Diagnosis

Gobbin F, Zanoni M, Marangi A, et al.
2017 McDonald criteria for multiple sclerosis: Earlier diagnosis with reduced specificity?
Mult Scler Relat Disord. 2019 Jan 3;29:23-25. [Epub ahead of print]
abstract

Mirza RD, Ren M, Agarwal A, et al.
Assessing patient perspectives on receiving bad news: a survey of 1337 patients with life-changing diagnoses.
AJOB Empir Bioeth. 2018 Dec 31:1-8. [Epub ahead of print]
abstract

Disease modifying drugs

Alcalá C, Gascón F, Pérez-Miralles F, et al.
Treatment with alemtuzumab or rituximab after fingolimod withdrawal in relapsing-remitting multiple sclerosis is effective and safe.
J Neurol. 2019 Jan 19. [Epub ahead of print]
abstract

Sainz de la Maza S, Medina S, Villarrubia N, et al.
Factors associated with dimethyl fumarate-induced lymphopenia.
J Neurol Sci. 2019 Jan 8;398:4-8. [Epub ahead of print]
abstract

Vukusic S, Brassat D, de Seze J, et al.
Single-arm study to assess comprehensive infusion guidance for the prevention and management of the infusion associated reactions (IARs) in relapsing-remitting multiple sclerosis (RRMS) patients treated with alemtuzumab (EMERALD).
Mult Scler Relat Disord. 2019 Jan 6;29:7-14. [Epub ahead of print]
abstract

Brown JWL, Coles A, Horakova D, et al.
Association of initial disease-modifying therapy with later conversion to secondary progressive multiple sclerosis.
JAMA. 2019 Jan 15;321(2):175-187.
abstract

Green AJ.
Potential benefits of early aggressive treatment in multiple sclerosis.
JAMA Neurol. 2019 Jan 15. [Epub ahead of print]
abstract

Sellner J, Rommer PS.
A review of the evidence for a natalizumab exit strategy for patients with multiple sclerosis.
Autoimmun Rev. 2019 Jan 11. pii: S1568-9972(19)30005-9. [Epub ahead of print]
abstract

Kalincik T, Kubala Havrdova E, Horakova D, et al.
Comparison of fingolimod, dimethyl fumarate and teriflunomide for multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2019 Jan 13. pii: jnnp-2018-319831. [Epub ahead of print]
abstract

Myhr KM, Torkildsen Ø, Lossius A, et al.
B cell depletion in the treatment of multiple sclerosis.
Expert Opin Biol Ther. 2019 Jan 11:1-11. [Epub ahead of print]
abstract

Freedman MS, Duquette P, Grand'Maison F, et al.
The clinical and cost impact of switching to fingolimod versus other first line injectable disease-modifying therapies in patients with relapsing multiple sclerosis.
Curr Med Res Opin. 2019 Jan 5:1-10. [Epub ahead of print]
abstract

Aramideh Khouy R, Karampoor S, Keyvani H, et al.
The frequency of varicella-zoster virus infection in patients with multiple sclerosis receiving fingolimod.
J Neuroimmunol. 2018 Dec 26;328:94-97. [Epub ahead of print]
abstract

Hartung HP, Graf J, Kremer D.
Long-term follow-up of multiple sclerosis studies and outcomes from early treatment of clinically isolated syndrome in the BENEFIT 11 study.
J Neurol. 2019 Jan 4. [Epub ahead of print]
abstract

Förster M, Küry P, Aktas O, et al.
Managing risks with immune therapies in multiple sclerosis.
Drug Saf. 2019 Jan 3. [Epub ahead of print]
abstract

Yoon EL, Cheong WL.
Adherence to oral disease-modifying therapy in multiple sclerosis patients: A systematic review.
Mult Scler Relat Disord. 2018 Dec 19;28:104-108. [Epub ahead of print]
abstract

Gasperini C, Prosperini L, Tintoré M, et al.
Unraveling treatment response in multiple sclerosis: A clinical and MRI challenge.
Neurology. 2019 Jan 22;92(4):180-192.
abstract
Read the full text of this paper

Thach AV, Brown CM, Herrera V, et al.
Associations between treatment satisfaction, medication beliefs, and adherence to disease-modifying therapies in patients with multiple sclerosis.
Int J MS Care. 2018 Nov-Dec;20(6):251-259.
abstract
Read the full text of this paper

Drugs in development

Honce JM, Nair KV, Sillau S, et al.
Rituximab vs placebo induction prior to glatiramer acetate monotherapy in multiple sclerosis.
Neurology. 2019 Jan 11. pii: 10.1212/WNL.0000000000006916. [Epub ahead of print]
abstract

Behrangi N, Fischbach F, Kipp M.
Mechanism of siponimod: anti-inflammatory and neuroprotective mode of action.
Cells. 2019 Jan 7;8(1). pii: E24.
abstract
Read the full text of this paper

Naegelin Y, Naegelin P, von Felten S, et al.
Association of rituximab treatment with disability progression among patients with secondary progressive multiple sclerosis.
JAMA Neurol. 2019 Jan 7. [Epub ahead of print]
abstract

Other treatments

Patti F.
Newest evidence for tetrahydrocannabinol:cannabidiol oromucosal spray from postapproval pragmatic studies.
Neurodegener Dis Manag. 2019 Jan 18. [Epub ahead of print]
abstract

Marková J.
Newest evidence for tetrahydrocannabinol:cannabidiol oromucosal spray from randomized clinical trials.
Neurodegener Dis Manag. 2019 Jan 18. [Epub ahead of print]
abstract

Phé V, Schneider MP, Peyronnet B, et al.
Desmopressin for treating nocturia in patients with multiple sclerosis: A systematic review: A report from the Neuro-Urology Promotion Committee of the International Continence Society (ICS).
Neurourol Urodyn. 2019 Jan 17. [Epub ahead of print]
abstract

Torres-Moreno MC, Papaseit E, Torrens M, et al.
Assessment of efficacy and tolerability of medicinal cannabinoids in patients with multiple sclerosis: a systematic review and meta-analysis.
JAMA Netw Open. 2018 Oct 5;1(6):e183485.
abstract
Read the full text of this paper

Slaven M, Levine O.
Cannabinoids for symptoms of multiple sclerosis: benefits to patients still unclear.
JAMA Netw Open. 2018 Oct 5;1(6):e183484.
abstract
Read the full text of this paper

Beckett JM, Bird ML, Pittaway JK, et al.
Diet and multiple sclerosis: scoping review of web-based recommendations.
Interact J Med Res. 2019 Jan 9;8(1):e10050.
abstract
Read the full text of this paper

Herden L, Weissert R.
The impact of coffee and caffeine on multiple sclerosis compared to other neurodegenerative diseases.
Front Nutr. 2018 Dec 21;5:133.
abstract
Read the full text of this paper

Mojaverrostami S, Bojnordi MN, Ghasemi-Kasman M, et al.
A review of herbal therapy in multiple sclerosis.
Adv Pharm Bull. 2018 Nov;8(4):575-590.
abstract
Read the full text of this paper

Ayoobi F, Moghadam-Ahmadi A, Amiri H, et al.
Achillea millefolium is beneficial as an add-on therapy in patients with multiple sclerosis: A randomized placebo-controlled clinical trial.
Phytomedicine. 2019 Jan;52:89-97.
abstract
Read the full text of this paper

Arreola-Mora C, Silva-Pereyra J, Fernández T, et al.
Effects of 4-aminopyridine on attention and executive functions of patients with multiple sclerosis: Randomized, double-blind, placebo-controlled clinical trial. Preliminary report.
Mult Scler Relat Disord. 2018 Dec 19;28:117-124. [Epub ahead of print]
abstract

Paediatric MS

Kirk S, Hinton D.
I'm not what I used to be": A qualitative study exploring how young people experience being diagnosed with a chronic illness.
Child Care Health Dev. 2019 Jan 16. [Epub ahead of print]
abstract

Pregnancy and childbirth

Lavorgna L, Esposito S, Lanzillo R, et al.
Factors interfering with parenthood decision-making in an Italian sample of people with multiple sclerosis: an exploratory online survey.
J Neurol. 2019 Jan 16. [Epub ahead of print]
abstract

Nguyen AL, Havrdova EK, Horakova D, et al.
Incidence of pregnancy and disease-modifying therapy exposure trends in women with multiple sclerosis: A contemporary cohort study.
Mult Scler Relat Disord. 2019 Jan 3;28:235-243. [Epub ahead of print]
abstract

Dobson R, Dassan P, Roberts M, et al.
UK consensus on pregnancy in multiple sclerosis: 'Association of British Neurologists' guidelines.
Pract Neurol. 2019 Jan 5. pii: practneurol-2018-002060. [Epub ahead of print]
abstract
Read the full text of this paper

Novo A, Castelo J, de Sousa A, et al.
Pregnancy outcomes in Portuguese women with multiple sclerosis: The PREGNIMS study.
Mult Scler Relat Disord. 2018 Dec 26;28:172-176. [Epub ahead of print]
abstract

Kaplan TB, Bove R, Galetta K, et al.
Effect of pregnancy loss on MS disease activity.
J Neurol Sci. 2018 Dec 21;397:58-60. [Epub ahead of print]
abstract

Prognosis

Dekker I, Eijlers AJC, Popescu V, et al.
Predicting clinical progression in multiple sclerosis after six and twelve years.
Eur J Neurol. 2019 Jan 10. [Epub ahead of print]
abstract
Read the full text of this paper

Ladeira F, Salavisa M, Caetano A, et al.
The influence of menopause in multiple sclerosis course: a longitudinal cohort study.
Eur Neurol. 2019 Jan 15;80(3-4):223-228. [Epub ahead of print]
abstract

Provision of care

Roddam H, Rog D, Janssen J, et al.
Inequalities in access to health and social care among adults with multiple sclerosis: A scoping review of the literature.
Mult Scler Relat Disord. 2019 Jan 3;28:290-304. [Epub ahead of print]
abstract

Psychological aspects

Freeman J, Gorst T, Gunn H, et al.
A non-person to the rest of the world": experiences of social isolation amongst severely impaired people with multiple sclerosis.
Disabil Rehabil. 2019 Jan 18:1-9. [Epub ahead of print]
abstract

Hampson N, King L, Eriksson LM, et al.
The effects of relaxation training on depression and anxiety in people living with long-term neurological conditions.
Disabil Rehabil. 2019 Jan 17:1-6. [Epub ahead of print]
abstract

Ghahari S, Forwell SJ, Suto MJ, et al.
Multiple sclerosis self-management model: Personal and contextual requirements for successful self-management.
Patient Educ Couns. 2018 Dec 28. pii: S0738-3991(18)31030-9. [Epub ahead of print]
abstract

Pagnini F, Cavalera C, Rovaris M, et al.
Longitudinal associations between mindfulness and well-being in people with multiple sclerosis.
Int J Clin Health Psychol. 2019 Jan;19(1):22-30.
abstract
Read the full text of this paper

Balto JM, Pilutti LA, Motl RW.
Loneliness in multiple sclerosis: possible antecedents and correlates.
Rehabil Nurs. 2019 Jan/Feb;44(1):52-59.
abstract

Butler E, Thomas R, Carolan A, et al.
'It's the unknown' - understanding anxiety: from the perspective of people with multiple sclerosis.
Psychol Health. 2018 Dec 27:1-16. [Epub ahead of print]
abstract

Rehabilitation

Grubić Kezele T, Babić M, Štimac D.
Exploring the feasibility of a mild and short 4-week combined upper limb and breathing exercise program as a possible home base program to decrease fatigue and improve quality of life in ambulatory and non-ambulatory multiple sclerosis individuals.
Neurol Sci. 2019 Jan 18. [Epub ahead of print]
abstract

Ng A, Bunyan S, Suh J, et al.
Ballroom dance for persons with multiple sclerosis: a pilot feasibility study.
Disabil Rehabil. 2019 Jan 13:1-7. [Epub ahead of print]
abstract

Amatya B, Khan F, Galea M.
Rehabilitation for people with multiple sclerosis: an overview of Cochrane Reviews.
Cochrane Database Syst Rev. 2019 Jan 14;1:CD012732. [Epub ahead of print]
abstract
Read the full text of this paper

Freitas EDS, Frederiksen C, Miller RM, et al.
Acute and chronic effects of whole-body vibration on balance, postural stability, and mobility in women with multiple sclerosis.
Dose Response. 2018 Dec 27;16(4):1559325818816577.
abstract
Read the full text of this paper

Sánchez-Lastra MA, Martínez-Aldao D, Molina AJ, et al.
Pilates for people with multiple sclerosis: A systematic review and meta-analysis.
Mult Scler Relat Disord. 2019 Jan 3;28:199-212. [Epub ahead of print]
abstract

Kalron A, Menascu S, Frid L, et al.
Physical activity in mild multiple sclerosis: contribution of perceived fatigue, energy cost, and speed of walking.
Disabil Rehabil. 2019 Jan 8:1-7. [Epub ahead of print]
abstract

Fjeldstad-Pardo C, Thiessen A, Pardo G.
Telerehabilitation in multiple sclerosis: results of a randomized feasibility and efficacy pilot study.
Int J Telerehabil. 2018 Dec 11;10(2):55-64.
abstract
Read the full text of this paper

Stem cells

Burt RK, Balabanov R, Burman J, et al.
Effect of nonmyeloablative hematopoietic stem cell transplantation vs continued disease-modifying therapy on disease progression in patients with relapsing-remitting multiple sclerosis: a randomized clinical trial.
JAMA. 2019 Jan 15;321(2):165-174.
abstract

Atkins H.
Stem Cell Transplantation to Treat Multiple Sclerosis.
JAMA. 2019 Jan 15;321(2):153-155.
abstract

Symptoms and symptom management

Rooney S, Wood L, Moffat F, et al.
Prevalence of fatigue and its association with clinical features in progressive and non-progressive forms of Multiple Sclerosis.
Mult Scler Relat Disord. 2019 Jan 3;28:276-282. [Epub ahead of print]
abstract

Krbot Skorić M, Crnošija L, Gabelić T, et al.
Autonomic symptom burden can predict disease activity in early multiple sclerosis.
Mult Scler Relat Disord. 2019 Jan 3;28:250-255. [Epub ahead of print]
abstract

Kahraman T, Özdoğar AT, Ertekin Ö, et al.
Frequency, type, distribution of pain and related factors in persons with multiple sclerosis().
Mult Scler Relat Disord. 2019 Jan 3;28:221-225. [Epub ahead of print]
abstract

Sexton C, Lalloo R, Stormon N, et al.
Oral health and behaviours of people living with multiple sclerosis in Australia.
Community Dent Oral Epidemiol. 2019 Jan 7. [Epub ahead of print]
abstract

Abdel Salam OA, Ghonimi NAM, Ismail MH.
Risk of obstructive sleep apnea in multiple sclerosis: Frequency, clinical and radiological correlates.
Mult Scler Relat Disord. 2018 Dec 31;28:184-188. [Epub ahead of print]
abstract

Fitzgerald KC, Salter A, Tyry T, et al.
Pseudobulbar affect: Prevalence and association with symptoms in multiple sclerosis.
Neurol Clin Pract. 2018 Dec;8(6):472-481.
abstract

Vitamin D

Häusler D, Weber MS.
Vitamin D supplementation in central nervous system demyelinating disease-enough is enough.
Int J Mol Sci. 2019 Jan 8;20(1). pii: E218.
abstract
Read the full text of this paper

Print this page