Is it safe for my wife to conceive with NMOSD at 29?

Question

Hi doctor,

My 29-year-old wife was diagnosed with NMOSD after she experienced sudden vision loss in both eyes during her first pregnancy at seven months.

The optic neuritis was so severe that she was legally blind for two weeks and required high-dose IV steroids. The baby was delivered early by C-section at 32 weeks and is doing well, but my wife still has permanent vision damage in her left eye.

Her AQP4 antibody came back strongly positive at a titer of 1:640, confirming neuromyelitis optica spectrum disorder. She was started on Rituximab infusions every six months, but experienced a severe infusion reaction requiring Epinephrine. She is now on Eculizumab infusions every two weeks, which seems to be effective.

Since her diagnosis, she has had two more relapses: one with transverse myelitis, causing leg weakness and bladder problems, and another with brainstem symptoms, including severe nausea and double vision. MRI shows extensive lesions in her optic nerves and spinal cord.

We want to have more children but are terrified that pregnancy will trigger another NMOSD attack. Her neurologist advises that she stay on Eculizumab during pregnancy, but we are concerned about potential effects on the baby. She is also taking Gabapentin 600 mg three times daily for neuropathic pain and Oxybutynin for bladder spasms.

Can women with NMOSD safely have more pregnancies? What happens if she experiences a severe relapse while pregnant?

Please help.

Answer 1

Hello,

Welcome to icliniq.com.

NMOSD (neuromyelitis optica spectrum disorder) is a challenging illness, and pregnancy decisions are especially complex. Let me explain clearly:

NMOSD often flares during pregnancy, particularly after delivery. Hormonal and immune changes can increase the risk of relapse.

Attacks during pregnancy such as optic neuritis, myelitis, or brainstem involvement can be severe and sometimes cause permanent damage. Therefore, preventing relapses is extremely important.

Eculizumab (a complement inhibitor) has been used safely in some pregnant women, particularly for a condition called paroxysmal nocturnal hemoglobinuria. Data in NMOSD is more limited, but current evidence suggests it does not cross the placenta in significant amounts and may be relatively safe for both mother and baby. Most experts recommend continuing it if it effectively controls relapses.

Rituximab can also be used before conception to provide relapse protection, but your wife had a severe reaction, so this is not an option for her.

If a severe relapse occurs during pregnancy, high-dose IV (intravenous) steroids are the first-line treatment. In resistant cases, plasma exchange is also considered safe during pregnancy and can help preserve vision or mobility.

Pregnancy is possible with NMOSD but should be considered high-risk. She should be monitored by a multidisciplinary team, including a neurologist, high-risk obstetrician, and neonatologist.

Babies are usually delivered safely, but preterm birth as occurred with her first pregnancy is more common due to relapses or treatment needs.

Breastfeeding while on eculizumab is generally considered safe, as very little of the drug passes into breast milk.

Other medications are:

Gabapentin for nerve pain can usually be continued during pregnancy if needed, though dose adjustments may be required.
Oxybutynin for bladder spasms has limited safety data, so her doctors may consider alternative bladder management strategies during pregnancy.

NMOSD is a lifelong condition, but with modern therapies like Eculizumab, the risk of disability is much lower than in the past.

The key is relapse prevention, as each attack carries the risk of permanent vision or mobility loss. Protecting her health also protects the baby’s well-being.

I hope this has helped you.

Please feel free to reach out to me again if you have further queries.

Thank you.

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