Living With MS
Do Women With MS Actually Feel Better During Pregnancy?
During pregnancy, many patients with multiple sclerosis experience relief from their symptoms. Can researchers actually use this fact to find treatments for the disease?
Days before Katie Flynn, a mom of three in Washington, found out she was pregnant with her third child, she went in for a routine MRI. The scan was part of her treatment for multiple sclerosis (MS), a chronic neurological disease that was first diagnosed when she was 24. The MRI revealed that Flynn had a large active lesion, an area of damage or scarring, on the left temporal lobe of her brain. Her doctor asked her if she had been having any problems with speech or comprehension. She hadn’t, she said, but added that there was a chance she could be pregnant.
A week later, Flynn confirmed the good news. Her doctors would not change her medications while she was pregnant, but they warned her that postpartum, she would need to switch her medications to more aggressively treat the lesion on her brain. (There are several treatments for MS, ranging from injections and oral medications to infusions, but there is no cure for the disease, which frequently progresses more quickly as patients age and, when serious, can leave people paralyzed.) But nine months later, shortly after Flynn’s son was born, another MRI scan showed that the lesion on her brain was no longer active. She didn’t need to switch medications or treat it further. “It was absolutely the pregnancy that fixed that lesion,” she says.
Flynn’s story is part of a now well-documented phenomenon: During pregnancy, many MS patients will feel relief from their symptoms and may even experience the kind of regression that doctors saw on Flynn’s MRI. This wasn’t always thought to be true. As recently as the early 1990s, conventional wisdom said that women with MS, an autoimmune disorder in which the body’s immune system attacks myelin, the protective covering of the nerve cells in the brain, optic nerve, and spinal cord, should not get pregnant. In part, experts feared pregnancy could worsen or accelerate MS disease progression, says Dr. Marwa Kaisey, M.D., a neurologist and MS specialist at Cedars Sinai in Los Angeles.
Then, in 1998, the Pregnancy in Multiple Sclerosis (PRIMS) study — the first big prospective study looking at pregnancy and MS — found that the opposite was true: The rate of MS relapses declined during pregnancy, and women felt better. Subsequent studies have replicated the findings.
Today, doctors like Kaisey tell their patients with MS, which impacts women up to three times more than men, that you can absolutely have a healthy pregnancy with MS — and you may even feel better than you have in a long time. “What was first observed in the clinic, and by speaking to women with MS, is that MS symptoms would get milder and sometimes even disappear when people were pregnant,” explains Kaisey. “The other important thing that was observed is that relapse rate and new MS inflammatory activity also decreased during pregnancy and decreases with each trimester.” Some studies find that MS relapses decrease by 70% during the last third of pregnancy.
“It was really nice to feel like I could have this symptom for all of these years, and then it just — poof — went away. It made me feel like there’s always hope that certain symptoms can turn around.”
Flynn did indeed feel better during all three of her pregnancies. Even while being treated for MS before pregnancy, she’d feel tired in hot weather, her hands would tingle, and she frequently experienced fatigue. (Common MS symptoms include tingling or numbness, sometimes on one side of the body, blurry vision, debilitating exhaustion, and more.) During her pregnancies? Nothing.
Kristen Karasek, a mom of two in Los Angeles who has MS, says that before pregnancy, if she’d walk for too long, her feet would tingle. Pregnancy was the first time she hadn’t experienced the symptom since she had been diagnosed in her 20s. “It was really nice to feel like I could have this symptom for all of these years, and then it just — poof — went away. It made me feel like there’s always hope that certain symptoms can turn around.”
In both of her pregnancies, Karasek says that MS-related sensory issues, such as going “half hot” (where different sides of her body felt different temperatures) or feeling like the palms of her hands had the texture of sandpaper, disappeared. “All the way through pregnancy, I didn’t experience symptoms at all. Not at all.” This brought her a sense of ease throughout pregnancy that her life had been missing. “It felt really good physically. When you’re dealing with struggles every day, you kind of get used to it.”
She says she tries not to compare her experience in pregnancy with other people’s experiences, including those without MS who may find pregnancy to be a challenging time. “Pregnancy is a personal experience,” she says. “It is an amazing reprieve that people with MS generally have good pregnancies; especially because we have so many additional health concerns to deal with daily. Knowing that people with MS are successful in pregnancy allowed me to go into it with a positive mindset and mental health.”
Gina Oakley, a mom of one in Evansville, Indiana, who had experienced tingling hands and feet, a weakened grip strength, and brain fog from her MS, echoes similar sentiments about her pregnancy: “I think that I forgot what it felt like to feel normal. I felt so good. When I was pregnant, I was full of energy. I felt like a totally different human.”
Pregnancy causes what doctors refer to as a “downshift” in the immune system, so that it does not recognize the fetus as foreign and attack it. It is this downshift that improves symptoms associated with MS. As the immune system “calms down” to allow healthy growth of the fetus, it might also not attack the nervous system during that time, Kaisey explains.
The scars or lesions on the brain or spinal cord associated with MS don’t go away during pregnancy, but Dr. Suma Shah, M.D., a neurologist at Duke who studies MS, says she suspects that during pregnancy, there’s a decrease in the inflammatory aggravation of existing scars.
An increase in progesterone and the shifts in levels and types of estrogen that happen throughout pregnancy also seem to decrease both new inflammatory activity due to MS and to decrease women’s perception of their pre-existing MS symptoms, Kaisey says.
“I think that I forgot what it felt like to feel normal. I felt so good. When I was pregnant, I was full of energy. I felt like a totally different human.”
But after delivery, every woman with MS has a different story. In the first three months postpartum, MS relapse rates can almost double. A very rapid shift of hormones after delivery can play a role here, says Kaisey, as can having a very demanding new person in the family. Both sleep deprivation and stress — which come in spades in the postpartum months — can increase people’s perception of their MS symptoms, she says.
“Sleep deprivation and a new baby are a lot for anyone to balance, but when you add in the kind of harrowing notion that you need to make sure to rest to keep your MS at bay, it’s even harder,” says Karasek.
After Oakley had her son, her symptoms returned, and they were worse than they had ever been. “You feel great for nine months, and then it all comes crashing back down on you,” she says. She got back on her medication right away, which helped alleviate some of her symptoms, but since giving birth in 2022, she’s noted new symptoms and says her existing MS symptoms have been more noticeable.
There is also some data that exclusive breastfeeding could reduce the relapse rate. This was largely the case for Flynn, who notes that she did not notice an uptick in symptoms postpartum while she breastfed her three children. But breastfeeding isn’t always a balm. “In a high-stress situation, when a new mom is already managing chronic illness, exclusive breastfeeding can sometimes add an extra stressor,” says Shah. That’s why the goal is to try to get back on treatment “as soon as safely possible,” she says.
After Karasek delivered, she opted to go right back onto her medication instead of breastfeeding. There’s not a lot of good data on the safety of many MS medications for lactating women, so they are often advised to choose between the two. She began to have strong reactions — including chest pain and heart racing — to the medication she had been on pre-pregnancy, which prompted her to switch meds. Once Karasek, whose children are now 6 and 4, got her medication sorted, she says the symptoms she has now feel very similar to the ones she experienced pre-pregnancy.
Oakley says she doesn’t feel as good as she did before she was pregnant. “My symptoms disrupt my day sometimes,” she says. “I have to miss morning workouts because of how I feel. That was never the case before.”
Because there are also many different factors that can contribute to an MS patient’s postpartum experience, experts say it’s important to discuss with your doctor what your plan is for after the baby is born.
“I often tell folks that during pregnancy, I expect them not to have high needs because that’s what the science really shows. I typically check in once in the first trimester when they tell me they’ve become pregnant, and then I say, ‘I’m around if you need me, but I’ll leave you alone until the third trimester,’” says Shah. That third-trimester check-in, to her, is the most important visit with your clinician because you can “come up with a plan for what postpartum is going to look like,” taking into account things like how your pregnancy is going, breastfeeding goals, what may have helped control disease well before pregnancy, and whether or not the patient can get back on that safely when it comes to their breastfeeding.
“When my MS symptoms relaxed in pregnancy, I became less anxious. I think it gave me a better quality of mental health.”
There is hope that women’s experiences with MS in pregnancy — as well as the return of their symptoms postpartum — could point to better treatments for MS. “I am optimistic that a better understanding of both the hormone changes throughout pregnancy and why they have these effects on MS could lead to treatment options in the future,” says Kaisey.
Scientists know that, at least to some extent, MS is hormonally mediated, and estrogen levels are a particularly tantalizing focus for researchers. “What we’ve been chasing in the science is, is there some magical spot between too much and too little [estrogen] that may be able to recreate what women experience through pregnancy, and that can be protective against MS symptoms or inflammation?” says Shah. There is research out of the University of California, San Francisco, and clinical trials underway to study just that. “I have a sneaking suspicion that the sweet spot for estrogen levels is going to be unique to each individual person,” says Shah. “What’s too much for one person may be the right amount for the next.”
Current Food and Drug Administration approved drugs are shown to reduce new inflammation, but there is nothing on the market at this time that has been shown to promote healing or remyelination, the process by which new myelin sheaths are generated throughout the central nervous system, explains Shah. “This would be a completely new way of approaching the disease.”
Another area that researchers are exploring is the degree to which MS treatments actually pass into breast milk, which may help women who feel they have to choose between breastfeeding or taking MS medication postpartum. “The results of these studies will enable women living with MS to make educated decisions regarding their treatments in the context of lactation,” says Shah.
Today, there’s a federal task force called Pregnant Women and Lactating Women (PRGLAC) to identify and address the gaps surrounding safe and effective treatments for pregnant and breastfeeding women. The studies regarding MS meds and lactation fall within the task force’s goals but are not necessarily spearheaded by or part of the group, says Shah. Historically, pregnant women and women in general have been left out of clinical trials. (It wasn’t until 1994 that the law required that women be included in all clinical trials.) The work is long overdue. “In a clinic where I’m taking care of a woman who has questions about whether they can breastfeed on their MS medication or exactly how going through menopause is going to affect her MS, I am often left trying to answer without the benefit of large, rigorous scientific studies,” says Kaisey. “It’s a real disservice to our patients that we don’t have these studies yet to help guide them.”
All in all, how to accurately and compassionately care for and support those living with a chronic illness through a time of immense change matters, as does ensuring that everyone has the right resources to turn to when they need them. “We’re fairly limited still,” says Shah. “I think there’s a lot of work to do, especially regarding clinical trials and pregnancy. But we’re headed in the right direction.”
As for the moms with MS, nine months with milder symptoms can be a welcome respite. “I think the biggest struggle throughout my MS journey has been my mental health and anxiety,” says Karasek. “When my MS symptoms relaxed in pregnancy, I became less anxious. I think it gave me a better quality of mental health.”
Oakley noticed this too — she says that getting a break from her symptoms during pregnancy was “refreshing” and “motivating” but also “kind of a bummer.” In part, that’s because she knew her MS symptoms would return after her baby was born. “It was kind of sucky because I got a taste of it, and I hadn’t felt that way in 10 years, and I knew it would not stick around. I tried just to enjoy it, but I also tried not to enjoy it too much and to be realistic, knowing that I probably wouldn’t feel this way after I had the baby.”
Some women have told Shah that they are left “chasing that pregnancy state” because they know how well they can feel. “It’s tough,” she says. “Many of them have shared with me that they wish they could be pregnant all the time.”