Authors
Roz Kalb , Psychologist
Family Planning Considerations for Men and Women with MS
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Any person considering parenthood has a lot to think about. Here are some of the most common questions women and men have about MS and pregnancy.
Women with MS go through pregnancy and childbirth just like other women. MS doesn’t impact the production of eggs or sperm – so be sure to use birth control until you’re ready to start a family.
MS is not a genetically transmitted disease. Although the risk of developing MS is higher for any individual who has a first-degree relative (parent, sibling, child) with MS, the risk remains relatively small. Compared to the 1 percent risk of MS in the general population, the risk for a child with one parent with MS is 3-5 percent. If both parents have MS, the risk is doubled. At the present time, there is no test that can determine whether a child will develop MS later in life. Since MS is not an inherited disease, there are many other factors besides genetic makeup that contribute to a child’s risk of getting MS. Exposure to secondhand smoke in utero and during childhood, as well as childhood obesity, are two of the most important. Data also suggests that exposure to sunlight and vitamin D may be protective. So don’t smoke, get plenty of sunshine and exercise now and later as a family, encourage your kids not to smoke, and eat healthy family meals.
Although individual experiences vary greatly, your pregnancy and delivery will be similar to any other woman’s. Even though data has shown that pregnancies in women with MS do not pose greater risks than pregnancies in the general population, some obstetricians may still treat yours as a high-risk pregnancy. Be sure to ask your obstetrician about their opinions about pregnancy and MS and what concerns, if any, they have about your pregnancy.
All pregnant women experience fatigue during their first and last trimester, and yours is likely to be compounded by MS fatigue. During the last trimester, you may find that the extra weight you are carrying impacts your mobility and balance, so it’s important to protect yourself from falls. You can safely use any anesthetic you choose during your delivery, but it’s important to meet with the anesthesiologist ahead of time to make sure they understand that your MS doesn’t need to be a factor in the decision.
Women with MS who get pregnant and give birth have the same long-term disease outcomes as those who don’t.
Because pregnancy hormones have an immune-suppressing effect that prevents the mother’s body from rejecting the “foreign” fetus that has DNA from each parent, a woman’s MS is likely to be less active during the nine months of pregnancy. In fact, many women with MS say they feel their best during those months, even though they have stopped their disease-modifying and symptom-management medications before conception and for the duration of the pregnancy. As the pregnancy hormones gradually diminish over the three to six months following delivery (or miscarriage or elective termination), a woman may be at higher risk for an MS relapse, especially if she has had a very active disease before she became pregnant. It is important for you to talk with your MS care provider about the best time for you to restart your DMT.
The simplest answer to this question is “no.” None of the MS DMTs are approved for use during pregnancy or breastfeeding – which basically means that most MS care providers will counsel you to stop your medications before trying to conceive. However, some MS care providers now believe there is sufficient data to suggest that it’s safe to continue taking glatiramer acetate and the interferon medications while trying to conceive and then stopping once your pregnancy is confirmed.
Almost all medications for symptom management also are not recommended during pregnancy.
Men with MS also need to consider the DMT they are taking before trying to conceive. Men as well women who are taking teriflunomide (Aubagio®) must stop the medication up to two years before trying to conceive. Fortunately, there is a medication (cholestyramine or activated charcoal) they can take that will eliminate the medication from their system more quickly.
Having MS does not impact a woman’s ability to breastfeed. Some data suggests that exclusive breastfeeding without any supplementation for at least 2 months has a protective effect against disease activity. Two factors may impact your decision about nursing your baby. If your MS has been very active before your pregnancy, your provider will likely recommend that you re-start your DMT right away; if your MS has been stable before pregnancy, you may opt to delay re-starting your medication while you breastfeed your baby.
One other thing to consider, however, is that new moms tend to be very tired, with or without MS, and breastfeeding takes a certain toll on the body. If MS fatigue has been a significant issue for you, you may decide to conserve energy by bottle-feeding your baby. Your decision should take into account both your baby’s well-being and your own. The decision is a very personal one – and there’s no right or wrong answer. At the very least, it is helpful to pump sufficient breastmilk for your partner to be able to take on nighttime feedings so that you can get restful sleep.
At this time, we have no information about the extent to which most DMTs pass into breastmilk, so the recommendation is that you do not restart your DMT until after you stop nursing. Your best bet is to discuss all your medications – both prescription and over-the-counter – with your MS provider, obstetrician, and pediatrician early in your family planning process in order to arrive at the best plan for you and your baby.
Being off your DMT is never ideal, so the answer really depends on how long it takes for you to conceive and how long you plan to nurse. If you conceive quickly, the pregnancy hormones will likely kick in soon enough to provide the immune suppression you need. The longer it takes to conceive and the longer you are off your DMT, the greater the risk of a relapse or increased disease activity on MRI. Exclusive nursing also seems to provide protection against disease activity, but again there are no guarantees. This is a very important conversation to have with your MS care provider ahead of time. Together you will figure out a plan, based on your recent disease activity, that offers you the maximum protection possible.
Most women with MS enjoy pregnancy because they feel so good. There are a few MS symptoms, however, that may be more than usually troublesome during pregnancy because they are also the plague of most pregnant women. Fatigue, urinary frequency, and urgency may worsen during the last trimester as you gain weight and the pressure increases on your bladder. Constipation may also worsen, particularly if you are drinking less because of urinary symptoms and/or you are taking iron supplements. Your obstetrician will be able to counsel you about this. Consulting an occupational therapist for energy management is always a good idea, whether you’re pregnant or not, so reach out to an OT if you’re concerned about the level of your fatigue.
Moms and dads with MS have healthy babies. There is no increase in the risk of premature births, stillbirths, birth defects, emergency cesarean sections, or assisted deliveries. Some data suggests that babies of moms with MS have a slightly lower birthweight, but not a difference that causes concern.
Living with MS, it’s common to question if you will be able to give your child what they need while managing your disease. That’s a concern any of us may have as we think about starting or adding to our family, with or without MS. The answer depends on how you define good parenting. If your image of parenting primarily involves being physically active with your kid, you may have to tweak it by including adaptive tools and strategies. If it involves cooking fancy meals, baking elaborate cakes and pies, or having late-night pajama parties, you may have to tweak that image too – but of course, an occupational therapist can help you with that. But the key essentials – the things that kids really need – love, support, security, and structure – can come in a wide variety of ways. By watching you manage challenges, solve problems, and create teamwork within the family, you will provide your kids with invaluable life skills.
Remind yourself that babies quickly grow into toddlers, teens, and young adults. Yes, it’s important to make sure you have enough help and support when you bring the baby home but allow yourself to think beyond that initial few weeks and months. Do you have the resources you need to provide a safe and comfy environment for your child? Do you and your partner or other family members have a handle on good communication and effective teamwork? Do you have the right people on your team to keep your MS and your symptoms under control? Are you open to using mobility aids and adaptive tools to conserve energy, simplify tasks, and enhance your comfort and productivity? Do you have a sense of humor? And can you give yourself grace when you don’t quite live up to the perfect image you have of parenting? Asking yourself these questions will help you make the best possible decisions for yourself and your child.
These questions and answers may bring more questions to mind. Your MS care provider, obstetrician, and pediatrician can all help you think through your options and choices. The most important thing is to begin conversations with them before you begin trying to conceive.
