Women with MS use social media to discuss and share their safety concerns about using DMT during pregnancy


Preliminary results from a study of women with multiple sclerosis (MS) suggest that these individuals engage with each other on social media platforms in discussion and knowledge-sharing practices to better understand their treatment options during the family planning phase of their lives.1

The group of investigators, led by Riley Bove, MD, associate professor of neurology, UCSF Weill Institute for Neurosciences, used social media listening platform Brandwatch to assess a total of 2,437 mentions on Twitter, Tumblr, Reddit, forums, blogs, and YouTube to prespecify keywords and retrieve mentions in English of the use of disease-modifying therapy (DMT) in women with MS from August 18, 2020 to August 18, 2021. Each word mention- keys was categorized by its sentiment, defined as positive, neutral, or negative; these were validated and manually labeled to identify women who had been, were currently, or were planning to become pregnant or breastfeeding.

In total, they manually analyzed 585 unique mentions, 255 of which related to DMT. Their findings were presented by Bove at the Consortium of Multiple Sclerosis Centers (CMSC) 2022 Annual Meeting, June 1-4, in National Harbor, Maryland.

The main themes identified among the population – which included women planning pregnancy (n=77) or currently pregnant/lactating (n=127) – were doubts about treatment or delaying treatment due to safety concerns. Notably, however, DMTs have been considered safe when recommended by health care providers (HCPs). Among women who had been pregnant (n = 34), most mentions were of willingness to receive treatment in the postpartum period.

Bove et al wrote that it was unclear whether this social media engagement stemmed from a desire for additional peer support or a lack of sufficient discussion between women with MS and their doctors. “This study aims to raise awareness among healthcare professionals of key concerns and education gaps among women with MS and to encourage proactive discussion about family planning as part of routine care,” they said. writing.

Asked about concerns about potential miscommunication between doctors and patients, Bove said NeurologyLive®, “most people who posted expressed mostly positive feelings toward their clinicians. They weren’t going [on social media] because they were upset or suspicious, they went there to increase and enrich their knowledge and the support they received.

Bove also expressed surprise at the positivity expressed by some people about certain medications during their pregnancy and breastfeeding periods. Of the posts mentioning known DMTs (n=181), ocrelizumab (Ocrevus; Genentech) was cited the most with 44 posts, followed by glatiramer acetate (Copaxone; Teva Pharmaceuticals) with 41, and natalizumab (Tysabri; Biogen), with 29. The majority of mentions of ocrelizumab and glatiramer acetate were related to safety and were classified by Bove et al as neutral to positive.

“For a long time we really let these patients down – we know they are at very high risk of postpartum relapse. Not everyone, but about a third of people have postpartum relapses and about half have new brain damage, even when there are no relapses,” Bove said. “This is a population that is one of the most at risk, period, of relapse in the entire clinical course, and we basically said, ‘Well, it’s unethical to treat you , then you either breastfeed or start your medications. ,’ or ‘stop your meds, even if you’re going to have a rebound.’ We always assume that patients don’t want to be exposed to drugs in any way, and in fact what you see is that they are quite nuanced. They interpret the risks and learn that some drugs are safer than others. Seeing patients really grappling with this information, with real-world data, and then passing that information on to others, I think, was really positive.

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The investigators acknowledged that MS is often diagnosed in women of childbearing age, but noted that “although several [DMTs] are available, most are not approved for women who are pregnant, trying to get pregnant, or breastfeeding. Where available, practice guidelines vary by region, and advice may differ from country to country. [HCPs].” Thus, pregnant or breastfeeding women with MS are often forced to weigh the potential health risks to themselves and their offspring, as stopping DMT therapy can lead to disease activity and progression.

This study is one of many in a growing body of publications aimed at evaluating the effects of MS and DMT treatment in people of childbearing age or pregnancy. In July 2021, results published in Neurology suggested that natalizumab could be an effective treatment option to minimize the risk of postpartum relapses in pregnant women with MS who interrupt DMT treatment during pregnancy. This finding was particularly relevant for people at low risk for progressive multifocal leukoencephalopathy.2

In this work, Vilija G. Jokubaitis, PhD, Principal Investigator, Department of Neuroscience, Monash University Data Futures Institute, and other members of the MSBase Study Group found that in their cohort of 1619 women and 1998 pregnancies, reinitiation DMT with natalizumab protected against postpartum relapse (RR, 0.11; 95% CI, 0.04-0.32; P <.0001 in contrast continued use of natalizumab during pregnancy reduced the risk relapse ratio per month ci>P = 0.017).

Overall, reinitiation with high-efficacy DMT independently protected against postpartum relapse and reduced the risk of relapse by 88.9% (RR, 0.111; 95% CI, 0.0382-0.322; P P = 0.016).

In addition, in March 2022, data published in the Multiple Sclerosis Journal by Christiane Gasperi, MD, physician and researcher, TUM School of Medicine, Technical University of Munich, and colleagues, suggested that pregnancies were associated with a lower risk of MS and may provide protective benefits for women.3

After identifying several cases less related to pregnancy International Classification of Diseases, 10th Revision (ICD-10) in women with multiple sclerosis (MS) than in those without autoimmune disorders, the results of a retrospective case-control study have shown.

Gasperi and colleagues sought to determine the relationships between pregnancies and gynecological diagnoses with MS risk by observing differences in ICD-10 gynecological code registration rates. The sample included women with MS (n=5,720), Crohn’s disease (n=6,280) or psoriasis (n=40,555) and women without these autoimmune diseases (n=26,729 ) in the 5 years prior to diagnosis.

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1. Bove R, Pasquarelli N, Gafarova M, Eighteen C, et al. Perceptions and discussions of the use of disease-modifying therapies during family planning in women with multiple sclerosis. Presented at: GFCS Annual Meeting; June 1-4, 2022; National Harbor, MD. DMT06.
2. Yeh WZ, Widyastuti PA, Van der Walt, A, et al. Natalizumab, fingolimod, and dimethyl fumarate use and pregnancy-related relapse and disability in women with multiple sclerosis. Neurology. 2021;96:e2989-e3002. doi:10.1212/WNL.0000000000012084
3. Gasperi C, Hapfelmeier A, Schneider A, et al. Association of pregnancies at risk of multiple sclerosis. Multiple Sclerosis Journal. Published online March 18, 2022. doi:10.1177/13524585221080542.

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