Why multiple sclerosis shouldn’t discourage women from living life on their terms

Receiving a diagnosis for multiple sclerosis (MS) can cause a lot of uncertainty on its own. MS occurs when the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between the brain and the rest of the body. Eventually, the disease can cause permanent damage or deterioration of the nerves, causing muscle pain and spasms, and even paralysis. Newly diagnosed patients often wonder about managing their symptoms, how the disease will progress, and how it might impact their work, their families, their hobbies.

While nearly 1 million people are living with MS in the United States, women are three times more likely than men to be diagnosed with MS. Not only are women’s nervous and immune systems different from men’s, but hormonal fluctuations experienced by women can exacerbate MS symptoms. Many women report that their MS symptoms relapse (also known as a flare-up) during their menstrual cycle and at menopause.

What’s more, as MS can impact a woman’s mobility and consequently, her independence, she might worry about how the disease might impact their reproductive health, family planning, and the health of her child.

Is it safe for women with MS to get pregnant?

One of the most common questions Dina Jacobs, MD, encounters is if it is safe for a woman with MS to conceive. Jacobs, an associate professor of Neurology in the Perelman School of Medicine at the University of Pennsylvania and clinical director of Penn’s Multiple Sclerosis Center, assures women that it is perfectly safe for a woman with MS to get pregnant and give birth. “Many women with MS worry about triggering a relapse and believe they shouldn’t have kids, but in fact, studies show that pregnancy is a relatively quiet period in terms of MS relapse,” she says. “Additionally, there is only a slightly increased risk of MS in first-degree relatives, so women shouldn’t overly worry about passing the disease onto their children, either.”

A study in 1998 revealed that the relapse rate of MS decreased significantly during pregnancy, especially in the third trimester, and increased in the first few months after delivery. And while some relapsed in the months immediately following birth, more recent research suggests this outcome is not as common as many women fear. By working with their care team to manage their MS, women with MS can have safe and healthy pregnancies.

“Due to advances in MS research, we are making diagnoses earlier, treating more effectively, and better managing relapses in general. When a patient’s MS is better managed prior to pregnancy, then the likelihood of relapse is therefore lower during and after pregnancy,” Jacobs adds. Therefore, it is important to get good care in the years prior to starting a family.

There are also advances in therapies that make planning for pregnancy easier for women with MS as well. For example, one such type of infusion therapy, anti-CD20 (aCD20) treatment, which depletes the B cells that contribute to the MS attacks, is administered every 6 months. The medication will be cleared from the body within a short period, but the protective effects last much longer. This allows a woman to attempt pregnancy shortly after dosing without fear of a relapse during pregnancy. Another oral therapy, cladribine, is dosed very infrequently and pregnancy may be planned around the use of this medication.

This makes family planning easier on women, as they won’t need to be concerned with how their treatments could impact a developing fetus.

What’s more, research shows that exclusive breastfeeding without supplemental formula may be protective against MS relapse; exclusive breastfeeding delays the onset of menses for a longer period, and it has been theorized that the suppression of ovulation may be protective in MS.

The growing variety of treatment options underscores the importance of a personalized approach to MS care. “An individualized approach for each patient allows us to provide the best care possible,” says Jacobs. “We think through considerations like medications, level of MS activity, and other factors the years before pregnancy to provide comprehensive, long-term treatment plans based on each patient’s individual priorities and concerns.”

What other aspects of reproductive health does MS affect?

Outside of family planning, Jacobs emphasizes that there are several other treatments to help manage MS in women specifically. For example, some women find that their MS symptoms get worse when they menstruate. In response, Jacobs recommends prescribing a longer acting birth control that will suppress cycles so that symptoms happen less frequently.

Some MS symptoms may be exacerbated by perimenopausal changes such as hot flashes or sleep disturbance. What’s more, common menopausal and MS-related symptoms (such as sexual dysfunction and sensory changes) and comorbidities (such as mood disorders) frequently overlap. Many women experience affective symptoms during menopause, like depression and anxiety. The prevalence of anxiety and depression is higher in MS than in the general population, with depression occurring in up to 50 percent of patients with MS. During the menopausal transition, women may also experience an increase in depression and anxiety symptoms, which may be compounded by interpersonal or physical changes, and may affect functioning in other arenas, such as work and family interactions. Fortunately, there are many treatments that may help, so it is important to discuss these symptoms with your provider.

Some experts suggest hormone replacement therapy (HRT) could be an effective treatment for alleviating some of these symptoms in perimenopausal women with MS, depending on an individual’s symptoms and the state of their MS relapses. This would be done with a provider who is trained in the use of HRT such as an OB/GYN.

Menopause also increases the risk of osteoporosis in women, for which women with MS may already have an increased risk, due to the effects of the steroids commonly used to treat MS and inactivity. However, Jacobs notes, with better therapies for MS, symptoms are better managed, and the need for such steroids is decreasing, in turn decreasing the risk for osteoporosis. There are also behavioral strategies, such as striving for a balanced diet with adequate calcium and vitamin D intake, smoking cessation, and avoidance of excessive alcohol intake, that can also help women with MS avoid developing osteoporosis.

How can MS impact family and other relationships?

An alarming trend among women with chronic illnesses like MS are the higher rates of abuse. According to the National MS Society, while extreme physical abuse happens in families living with MS just as it does in other families, less obvious forms of abuse also occur, including verbal abuse (cruel or demeaning language), neglect (depriving a person of essential care or opportunities to engage with others), or even subtle abuse in the form of rough or aggressive handling while assisting with dressing, bathing, or other activities. The National MS Society encourages anyone concerned about abuse in their household to contact the National Domestic Violence Hotline at 1-800-799-SAFE.

Jacobs notes, too, that divorce rates for women with chronic illness, such as MS, are higher, especially in young couples. The National MS Society offers some guidance for people with MS in relationships, including addressing communication and intimacy concerns with a certified sex therapist.

While there is a lot for women to think about when diagnosed with MS, Jacobs reiterates that as experts continue to research and understand MS, they can diagnose earlier, and more effectively manage and treat relapses. “MS can be a scary diagnosis for anyone, especially women,” she says. “But with the right treatments and resources, women with MS are increasingly able to live relatively healthy, fulfilling lives.”