What is NMOSD?

NMOSD is a rare neurological condition that affects your optic nerves (nerves that connect the eye to the brain), the spinal cord, and sometimes certain parts of the brain. Symptoms can include eye pain and not seeing clearly, or even blindness. Other symptoms can include pain, weakness or numbness in your arms and legs, loss of bladder and bowel control, and nausea or vomiting. There is no cure, so treatment focuses on managing the disease by treating acute relapses (attacks), preventing relapses, and managing symptoms during a relapse and those that persist afterwards.

Pregnancy and NMOSD

Little is known about pregnancy and NMOSD, but some studies have indicated a higher risk of pregnancy complications in people with NMOSD.¹ NMOSD can pose unique challenges in addition to the usual pregnancy symptoms and potential adverse pregnancy outcomes. If you are a woman of childbearing potential with NMOSD, please make sure that your healthcare provider is aware that you are currently pregnant or are planning to become pregnant.

Reference

1. National Institutes of Health: National Library of Medicine: National Center for Biotechnology Information: EPMA Journal. Neuromyelitis optica spectrum disorders and pregnancy: relapse-preventive measures and personalized treatment strategies. https://tinyurl.com/2xvaz88y

Does pregnancy have an effect on NMOSD?

Studies have shown that pregnancy can worsen NMOSD symptoms and might contribute to an onset of the disease.¹ Some studies have suggested that women with NMOSD more commonly experienced spontaneous abortions (miscarriages) and pre-eclampsia than other pregnant women.² Pre-eclampsia is a pregnancy complication that causes high blood pressure and, if it is left untreated, can cause serious outcomes, such as slowing of the growth of the baby.

However, it is possible that women living with NMOSD who are interested in having children can have a normal pregnancy and healthy children. Managing pregnancy with NMOSD is a collaborative effort. A successful pregnancy and delivery with NMOSD can be managed by planning ahead and getting the support of friends, family, and healthcare providers.

References

1. National Institutes of Health: National Library of Medicine: National Center for Biotechnology Information: EPMA Journal. Neuromyelitis optica spectrum disorders and pregnancy: relapse-preventive measures and personalized treatment strategies.
   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6107451/#:~:text=An%20NMOSD%20diagnosis%20confers%20increased,such%20as%20miscarriages%20and%20preeclampsia.&text=Careful%20and%20individualized%20risk%2Dbenefit,patient's%20history%20of%20disease%20activity
2. National Institutes of Health: National Library of Medicine: National Center for Biotechnology Information: Neurology. Pregnancy outcomes in aquaporin-4–positive neuromyelitis optica spectrum disorder.
   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4731292/#:~:text=Pregnancy%20after%20NMOSD%20onset%20is,independent%20of%20NMOSD%20onset%20timing.

How will NMOSD treatment affect my baby?

All pregnant women are advised to think carefully about any substances (for example, foods, drinks, and medications) they put into their body. This is because some substances can move from the mother’s bloodstream directly into the baby’s bloodstream (through the placenta). It is important to discuss all medications that you are taking with your healthcare provider when you are pregnant, including herbal medicines and supplements. Your healthcare provider will weigh the risks and benefits of any medications or treatment that you are currently taking to help you decide what to take during your pregnancy.

In many cases, when a woman takes a medication, the effect of that medication on the health of her baby is not known. This is because pregnant women are often prohibited from participating in studies that evaluate potential new medications. Therefore, pregnancy registries are studies conducted to learn more about medications and their effects on pregnant women and their babies. The aim is to provide women and their healthcare providers with information to help them make informed decisions about their treatment before and during pregnancy in the future.

It is not known at this time if satralizumab could harm your unborn baby. Satralizumab should be used during pregnancy only if the benefit outweighs the risks. Women with NMOSD are advised that if they use satralizumab while they are pregnant, they should make sure any doctor caring for their new baby knows that they used this medicine during pregnancy.

For this registry, we would like to ask you to share your pregnancy information if you have taken satralizumab in the 6 months before getting pregnant or at any time during your pregnancy. Sharing your pregnancy information with this registry could help give healthcare providers information about whether taking satralizumab could have an effect on pregnancy or the health and growth of babies.

Learn about the ENSPRYNG Pregnancy Registry here

Where can I go for help and advice?

Your healthcare provider should be the first source of information about your pregnancy and NMOSD. In addition, there are NMOSD patient advocacy groups where you can seek information from people who may have experience with NMOSD and pregnancy. Your healthcare provider may be able to help you contact a group that is active in your local area.