Why we need to talk about family planning in MS

Multiple sclerosis

13 Aug 2018

Multiple sclerosis specialist Professor Jeannette Lechner-Scott is on a mission to get MS specialists and neurologists in Australia talking about family planning with all women of childbearing age when diagnosed with relapsing-remitting MS.

She thinks a lot of neurologists shy away from the subject because they are uncomfortable talking to their young patients about pregnancy, especially if they are still teenagers.

“I think we definitely need to get involved in that discussion,” said Professor Lechner-Scott, a senior staff specialist in the Department of Neurology at the John Hunter Hospital and Conjoint Professor at the University of Newcastle.

“Women should be aware of what the consequences are when you start therapy, even if they aren’t thinking about pregnancy as yet, especially as up to 51% of all pregnancies [in the Australian general population] are unplanned.”

“It’s the minority of women who come to their doctor and say, ‘look I’m planning now to be pregnant within the next two years, what should I do?’”

“The majority just call you up and say, ‘I’m pregnant, what should I do?’”

In a recent European survey of 1,000 women aged 25–35 years diagnosed with relapsing-remitting MS (RRMS) in the last five years, the majority (81%) said they wished there was more or better family planning information for women with MS.1

The survey, which was funded by TEVA Pharmaceuticals, found that many women had not spoken to their neurologist/MS specialist (35%) or general practitioner (57%) about family planning, despite having concerns about pregnancy.

Furthermore, 82% of respondents highlighted family planning topics they wished they had discussed with their doctor at diagnosis but did not. The most common were treatment options while trying to conceive, what to expect during pregnancy, symptom dormancy during pregnancy and what to expect during delivery.

 MS on the rise in young women

Speaking to the limbic Professor Lechner-Scott said that the issue of pregnancy in MS has never been more pertinent than now, what with more young women than ever before being diagnosed with MS.

According to a 50-year epidemiological study looking at the prevalence and incidence of MS in Newcastle, Australia,2 women are now three times more likely to be diagnosed with MS than men. Back in the 1960s the female-male MS ratio was one to one. The prevalence of MS in Newcastle has risen linearly since it was first estimated in 1959 and then reviewed again in the 1980s and 1990s.

The latest review in 2011, led by Dr Karen Ribbons, an MS researcher from the Hunter Medical Research Institute, found that since 1996 the prevalence of MS has again doubled, fuelled by a substantial increase in new cases (from 2.44 to 6.70), predominantly in younger women. Results showed a 53% increase in female predominance since 1996.2

Professor Lechner-Scott says studies have ruled out the increase in new diagnoses being related to the advent of better diagnostic tools or to increased levels of immigration, and that MS is truly on the rise, particularly in younger women.

Worldwide trend but why?

Professor Lechner-Scott says the sharp rise in the incidence of MS is a worldwide trend, the reason for which is, as yet, unexplained.

One theory is that a diminished level of vitamin D is associated with MS risk and nowadays sunshine-induced vitamin D levels are lower.

MS has traditionally affected more people living farther from the equator, but Professor Lechner-Scott points out that people living in countries like Australia with high UV exposure are not necessarily getting more sun exposure because of the ‘Slip, Slop, Slap’ message to prevent sunburn and melanoma.

“So that’s one possibility why we’re seeing an increase, but it doesn’t explain why more women than men are getting MS,” she said.

She points to another possibility – that women are now having children later in life and as a result are missing out on the benefits of increased immune tolerance afforded by pregnancy.

“This hypothesis is supported by The Ausimmune Study [Australian Multi-centre Study of Environment and Immune Function3], where they looked at patients with first presentation of MS (clinically isolated syndrome) and matched controls,” she said.

The investigators, led by epidemiologist Professor Anne-Louise Ponsonby from the Murdoch children’s research institute in Victoria, compared the number of children and the number of pregnancies in 282 people who had been diagnosed with a clinically isolated syndrome (CIS) with matched controls who did not develop CIS.3

Women who had one pregnancy were around half as likely to develop CIS, while those who went on to have three or more pregnancies had at least a 73% reduction in the risk of developing CIS compared to controls.

“Pregnancy is protective…if women delay getting pregnant or don’t get pregnant that might be a reason for the increasing number of young women getting MS”, Professor Lechner-Scott said.

Pregnancy and the use of disease modifying treatment (DMTs)

In a review of MS treatment4, experts from across Australia and New Zealand say the risk of relapse associated with withdrawing DMTs leads to difficult decisions about whether treatment should continue until pregnancy has been confirmed, and whether therapy should be stopped during pregnancy itself – a decision often guided by recent disease activity and any previous experience of MS flares during pregnancy.

They note that the risk of relapse during pregnancy actually tends to decrease, but that this is balanced by an increased risk of disease activity in the first three months after birth.

Professor Lechner-Scott explained: “We know pregnancy itself is protective because you see the relapse rate going down from the first to the second to the third trimester, but the best predictor for long term disability is not to have a relapse during pregnancy and not to have a relapse after pregnancy.”

A recent review of management of women with MS through pregnancy and after childbirth also suggests that pregnancy is a major concern for many patients with MS, and flags pharmacotherapy as the major current pregnancy issue.5

The author Dr Patricia Coyle, an MS specialist at Stony Brook University Medical Center, US, noted that there are specific pregnancy-related management issues in MS, including questions and concerns about which DMTs patients should start or stop before pregnancy and at which point DMTs should be withdrawn before trying to conceive (the recommended washout periods).

There is a risk disease activity will re-emerge when women trying to get pregnant stop taking DMTs, particularly if it takes time to conceive, says Professor Lechner-Scott.

She says that it’s not uncommon for MS patients to experience delays in conceiving because women often only think about pregnancy in their 30s when fertility is decreasing rapidly, and that there is some evidence women with MS might have reduced ovarian reserve.

“If you stop treatment too early and especially if you’re on high-efficacy treatment … it’s quite likely you will relapse within eight to 12 weeks”, Professor Lechner-Scott notes.

“We try to avoid leaving patients off treatment for any prolonged period because of that rebound.”

Dr Coyle notes in her review that the DMT washout period should be as short as possible5, while Professor Lechner-Scott flags washout as an important consideration in choosing a DMT for women of childbearing age.

Safety data for DMTs in pregnancy

There are multiple DMTs approved for RRMS in Australia, but most are not recommended for use in patients who are trying to become pregnant.6 However, a recent development to the Copaxone (glatiramer acetate) PI may change the dialogue, whereby the recommendation that ‘a contraceptive cover should be considered whilst using this product’ was removed from its Australian Product Information.7

The change in prescribing information was in response to post-market information on more than 8,000 pregnancies, out of which 2,000 were prospectively reported with known outcome in patients exposed to conventional dose regimens of glatiramer acetate. In this cohort, the reported rate of fetal loss was below 14% while congenital anomalies or disorders occurred in less than 3% of the pregnancies, so both within the range found in a normal population.7

‘‘This supports that glatiramer acetate does not need a washout and can be continued during conception’’, Professor Lechner-Scott said.

But since most DMTs are not recommended for use in women trying to conceive, some newly diagnosed patients planning to start a family in the very near future may question whether to even start a DMT in the first place, she says.

But not starting therapy is probably not good advice, she says, because it is important to treat early. The best outcome for patients and for pregnancy is actually to be on therapy for two years before and to be stable on therapy, Professor Lechner-Scott advises because frequent relapses going into pregnancy is a predictor for postpartum relapse.

“If you have a patient who is very concerned about starting treatment because she wants to become pregnant, but doesn’t have highly active disease, then Copaxone remains a viable option” suggests Professor Lechner-Scott.

Nevertheless, she stresses that the choice of therapy for patients with MS depends on the phase and clinical activity of the disease, the practicalities of drug administration and individual patient considerations5, which must include family planning for women of childbearing age.


  1. Multiple Sclerosis and Family Planning – A Toolkit for Healthcare Professionals Managing Women with Multiple Sclerosis. European Neurological Review. 2018;13(Suppl. 1B):2-9.
  2. Ribbons K et al. Mult Scler 2017;23:1063-71.
  3. Ponsonby AL et al. Neurology 2012;78:867-74.
  4. Broadley S et al. Med J Aust 2015;203:139-41.
  5. Coyle P. Ther Adv Neurol Disord 2016;9:198-210.
  6. The Australian Categorisation system for prescribing medicines in pregnancy: https://www.tga.gov.au/australian-categorisation-system-prescribing-medicines-pregnancy (accessed 5 July 2018).
  7. Copaxone (glatiramer acetate) approved Product Information, 15 May 2018.

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