Family planning with NMOSD: Pregnancy, breastfeeding, treatment

Starting or growing your family when you have neuromyelitis optica spectrum disorder (NMOSD) can bring extra questions and decisions, but many people with NMOSD have healthy pregnancies and are able to breastfeed safely.

If you’re thinking about becoming pregnant or expanding your family, understanding NMOSD and pregnancy can help you feel more prepared and confident as you make decisions about your care.

Planning for pregnancy with NMOSD

One of the most important things you can do before trying to conceive is to make a plan with your healthcare team well in advance of becoming pregnant. NMOSD family planning is often most successful when your neurologist is involved from the start.

Neurologists often recommend that your NMOSD be stable for at least 12 months before conception. In addition, many of the disease-modifying therapies (DMTs) used to help prevent NMOSD relapses are not considered safe during pregnancy, and a neurologist will help determine whether you should switch medications.

Before trying to conceive, consider discussing the following with your healthcare team:

• your current NMOSD medications and whether any changes are needed before pregnancy
• how long your NMOSD has been stable and your risk of relapse
• the timing of pregnancy based on your treatment plan
• whether you should meet with a maternal-fetal medicine specialist
• whether you plan to breastfeed after delivery

Schedule a preconception appointment with your neurologist and, if possible, involve a maternal-fetal medicine specialist. These are obstetrical doctors with advanced training in high-risk pregnancies. Reviewing your medication history and previous relapses can help your healthcare team determine how NMOSD should be managed during your pregnancy. 

Managing medications during pregnancy

The use of NMOSD medications during pregnancy is an important conversation to have early on with your healthcare team. Researchers continue to learn more about how these therapies affect pregnancy and fetal outcomes, and your providers can help you find a balance between reducing your risk of relapse and supporting a healthy pregnancy.

When discussing treatment options with your healthcare team, consider asking:

• Is my current medication considered safe during pregnancy?
• Will I need a washout period before trying to conceive?
• How might my treatment plan change during pregnancy?
• What treatment options are available if I experience a relapse while pregnant?
• When might I need to restart treatment after delivery?

Many DMTs used to treat NMOSD cannot be safely used during pregnancy or for a few months before pregnancy. Some medications require a washout period to ensure the drug has cleared from your body before conception. Depending on your treatment history and disease activity, your neurologist may recommend transitioning to a medication that is considered safer during pregnancy. 

Corticosteroids have been used to treat NMOSD relapses during pregnancy and are generally considered compatible with pregnancy in certain situations. Intravenous immunoglobulin (IVIG), an infusion of antibodies that helps regulate the immune system, may also be considered in some circumstances.

These decisions are highly individualized, and your treatment plan will depend on your medical history, disease features, and your healthcare team’s recommendations.

Risk of relapses postpartum

The postpartum period, which includes the weeks and months after delivery, may be associated with an increased risk of NMOSD relapses, which can result in severe and irreversible neurological disability. Research suggests that the first three to six months after giving birth may be a particularly vulnerable period for some people living with NMOSD.

This information is not meant to discourage you. Instead, it can help you and your healthcare team prepare a plan for monitoring symptoms and managing treatment after delivery.

Researchers believe that changes in immune system activity before and after pregnancy may play an important role in NMOSD. During pregnancy, immune system changes can exacerbate disease activity in people with NMOSD, which is why the early postpartum period is associated with a high risk of relapse. 

After delivery, your healthcare team may recommend:

• monitoring closely for new or worsening symptoms
• restarting treatment soon after birth, if appropriate
• discussing how breastfeeding may affect your treatment plan
• scheduling follow-up visits with your neurologist during the first few months postpartum

Because a relapse may bring serious consequences, your neurologist may recommend restarting treatment relatively soon after delivery, depending on your symptoms, treatment history, and breastfeeding plans.

Breastfeeding and NMOSD treatments

Breastfeeding is something many people, including those with NMOSD, hope to do because it offers well-established benefits for both you and your baby. As with pregnancy, however, it is important to balance these benefits with your treatment needs.

Some DMTs used to treat NMOSD are not recommended while breastfeeding because they may pass into breast milk. Others have limited safety data, while a few may be considered compatible with breastfeeding under close medical supervision.

Talking with your neurologist before your baby is born can help you make an informed decision and create a treatment plan that aligns with your goals.

A lactation consultant, which is a healthcare professional who specializes in breastfeeding support, may also be a helpful resource. While these care providers do not make medication recommendations, they can offer practical guidance related to breastfeeding positions, fatigue, and mobility concerns that may arise with NMOSD.

Collaborating with your neurology and OB-GYN teams

Family planning with NMOSD is often easiest when your healthcare providers work together as a team. Ideally, your neurologist and OB-GYN, or maternal-fetal medicine specialist, should communicate with one another so your care remains coordinated throughout pregnancy and after delivery.

If your current providers have limited experience with NMOSD during pregnancy, consider asking for a referral to a specialist who does.

Organizations like the Siegel Rare Neuroimmune Association and the Guthy-Jackson Charitable Foundation can also help connect you with specialists and educational resources.

Going into appointments prepared can make a meaningful difference. You may want to:

• bring a list of all medications you’re taking, including supplements, to each appointment
• ask providers to document recommendations in writing so your care team has a shared record
• request a joint appointment or care conference if you feel your providers would benefit from discussing your care together

If pregnancy is something you are considering, now is a good time to begin planning. While pregnancy and the postpartum period may affect NMOSD activity, having a plan in place can help you feel more prepared for the changes ahead.

Every person’s experience with NMOSD is different, and the decisions you make about pregnancy, breastfeeding, and treatment should reflect your individual needs and goals. By learning about your options and working closely with your providers, you can make informed choices and create a plan that supports both your health and the health of your baby.