NMO and Pregnancy – A Patient’s Perspective

Both Erin and I have had successful pregnancies so we’re often asked how exactly we’ve done it. Truth is, no one really knows how we got so lucky (as we all know NMO is so unpredictable) but we did work with a great team of doctors, understood what we were getting into and built a plan that we think helped us stay on track.

Here’s our disclaimer: we are not doctors or ever think our opinion is superior. Pregnancy and NMO is not for everyone. This documentation is meant to provide insight into our journey and what we learned along the way. It’s meant as an external resource for those with Neuromyelitis Optica (NMO) who are considering pregnancy.

Q: I have NMO. Can I get pregnant?
A: Maybe. The reality is that there just aren’t enough documented cases of patients with NMO and pregnancy. There have been some successful cases, like ours and there have been some unsuccessful cases that have resulted in miscarriages and major NMO attacks.

Q: When is the best time for us to try getting pregnant?
A: Ideally you want as much time between your last attack and when you become pregnant. The longer time you provide your body with stability, the better. Our doctors recommended we wait several years before we even started the conversation about pregnancy. This is a conversation that should include your entire team of health care providers.

Q: I’m on a lot of medications. Are they safe for a pregnancy?
A: All immune suppressant medication, including Cellcept, Rituximab, and Imuran are classified as unsafe for pregnancy. Logically speaking, these drugs are meant to slow down an immune system, which doesn’t make sense for an unborn child who is developing an immune system inside you. There are several programs often affiliated with your local hospital that will help you determine which drugs are safer than others for use during a pregnancy, but remember, no drug is 100% safe during a pregnancy.

Q: But if I come off my medication won’t I suffer from another major attack?
A: Possibly. Ideally you want to wean off all unsafe medication (like immune suppressant drugs) and ramp up a suitable substitute (like prednisone) to provide you with some protection while you are pregnant. Only you can determine if you’re willing to take this risk with your body.

Q: Can I still try to get pregnant the good old fashion way?
A: You could but ideally you want to minimize the amount of time you are without the best treatment to protect you from another NMO attack. That’s why both of us decided to pursue in-vitro fertilization (IVF). That way we were able to time exactly when the unacceptable drugs were out of our system with a close date to when we would ideally be pregnant. Talk to your doctors to see if IVF is an option for you.

Q: What happens if I have an attack during my pregnancy?
A: This is something you’ll need to discuss as part of your plan and is very personal to you and your family. You’ll want to discuss your wishes with your team of doctors beforehand so everyone knows what you want should you experience an NMO attack during your pregnancy.

Q: Who should follow me medically while I am pregnant?
A: You’ll want to continue working with your existing medical team as they’ll be familiar with your history but you’ll also want to consider a high-risk obstetrician as some medication, like prednisone, can create additional problems like gestational diabetes, during your pregnancy.

Q: I’m worried about the delivery. Are there special considerations for patients with NMO?
A: It will depend on your wishes and what recommendations your team of doctors will make. Typically, if you’ve had a transverse myelitis (TM) attack you may want to consider a c-section to eliminate any extra pressure on your spine during delivery. Make sure you meet with your anesthesiologist beforehand to identify where the problem areas exist on your spine should you need or choose to get an epidural.

Q: My doctor wants me on my medication right after delivery but I really want to breastfeed. Can it be done?
A: It will depend how your pregnancy goes. If things go well you might have the option to delay your previous course of medication long enough to breastfeed for a period of time. Voice this desire with your doctors to build it into your plan. If you suffer from extreme symptoms or worse, an attack, during your pregnancy you’ll likely want to pursue the best treatment plan available as soon as possible so you can make sure you’re there for your new addition to your family. From our perspective we both chose to breastfeed for as long as it was safely recommended by our doctors – aside from all the regular benefits of breastfeeding, it also helped prolong the feeling of pregnancy for our bodies and allowed for a slower transition from pregnant to not pregnant, providing the opportunity to adjust.

Q: I’m worried I’ll gain a lot of weight during my pregnancy and will struggle to lose it once I start my treatment plan post-pregnancy. 
A: Like all new moms weight loss post pregnancy is a challenge. Build it into your plan to work with a nutritionist and set realistic goals knowing that movement isn’t always the easiest for NMO patients.

Q: Having NMO is already an emotional roller coaster. Can I handle a pregnancy?
A: Only you can answer that. Don’t get pressured into a pregnancy if you aren’t sure you can emotionally handle the unknowns and/or if you do not think your body can handle such physical changes. Be sure to have a positive support system available during the planning process, your pregnancy and available to assist post pregnancy. Be sure you talk through and agree on a plan for worse case scenarios.

10 Comments

  1. AShlee Olsen

    I had my first attack about 6 weeks after giving birth in 2004. in 2006 I was told I had nmo. in 2011 my husband and wanted another baby. I stopped my imuran in nov. of 2011 and gave myself 3 months to get pregant. jan.2012 we were to we were due in oct. oct.5 2012 I gave nirth to our daughter we named destiney. I had both my kids naturel and no drugs. i went back on my imuran right after I had her. my birth with my son in 2004 was so long and hard. my birth with my daughter was so easy. I got to the hospital at 6 am and they broke my water at 649 am and 10 mins later at 659 we selcomed our lil girl. I have not had an attack since 2006. I thank the lord every day. I was so scared to do it all over again since my attacks started after having my son but im so glad I took that chance.all I can say is have a good team of doctors and must of all have faith in god. he will carry you. god bless to anyone tryinb.

    Comment by AShlee Olsen on May 1, 2015 at 3:14 am

  2. laura

    Hi it so good to read your story, i was told i had nmo in 2012 since then i have been taken cellcept i got married 2 years ago and im planning to get pregnant, but in my country none of my doctors dare to remove the medicines. Im planning to take the risk by my self there are 2years without attack, but i dont know exactly how many time do i have to wait from the momment i stop the medicines to get pregnant.? I want my body to be detox of all medicines i have taken.
    thank you very much for your help.

    Comment by laura on May 12, 2015 at 1:23 am

  3. Jenna

    Hi Laura,

    I wouldn’t suggest removing the medication without doctor approval. Like we said, pregnancy isn’t for everyone. Show your doctor our blog so they see other patients have done it. Then you’ll want to work with your hospital to understand how long the medication sits within your system and it is finally safe for a pregnancy. Every drug is different.

    Hope that helps!
    Jenna

    Comment by Jenna on May 26, 2015 at 1:18 pm

  4. Shona

    Hello everyone,m feeling very relax by reading your comments.Last year when I was diagnosed with nmo I was so scared that my life will be going to end in few years but after reading your stories m feeling very happy nd relax.My all problems started in 2012 after my marriage.When I was completely ready for conceiving baby I had an attack of bilateral optic neuritis.I m on azathioprine now.I have alot of questions in my mind because the doctors treating me are not saying anything properly.First of all pls tell which medicines you all are taking to prevent relapses?? and which medicines u have taken during pregnancy??
    thanks for your help..

    Comment by Shona on June 9, 2015 at 11:46 am

  5. Jenna

    Hi Shona,

    Thank you for reading our blog and I’m sorry to hear that you’ve had a tough go with NMO. Most patients are on some sort of immune suppressant drug to prevent relapses. Some suggested protocols are rituxan, cellcept or imuran. During a pregnancy none of these drugs are safe for the baby so you’ll have to do prednisone to hopefully keep future relapses from occurring during your pregnancy. Best of luck.
    Jenna

    Comment by Jenna on June 11, 2015 at 2:39 pm

  6. Shona

    Hello Jenna..
    thanks for replying me..
    Actually m on Imuran from 8 months..I had 3 attacks in last 3 years but not severe..they were mild moderate type attacks..I just want to know that do you all also have mild initial attacks like me?Your all attacks are similar or the severity of attacks increases over time?I feel so scared to think what will happen if my mild attacks become severe..
    thanks once again Jenna..

    Comment by Shona on June 11, 2015 at 7:29 pm

  7. maria

    I was diagnosed with NMO at age 22 in 2006. I had two very severe attacks back to back in 2006. I was in the ICU for 6 months, I was paralyzed from the neck down, and I lost my vision in my right eye. The thing is, I was able to recover completely. i regained my sight and my ability to walk (it was not easy within 18 months). I have not had any relapses since 2007. I firmly believe God has blessed me with my miraculous recovery. I completely stopped all my medications in 2009 because I believed I was healthy enough to do so. Some doctors agreed and some didn’t. Ultimately, I made the final decision that was right for me. I stopped Rituxin and predinisone and I haven’t looked back. Ive have been fortunate. In 2013 I became pregnant with my son and I delivered him at 28 weeks via emergency c section ( I had pre eclampsia) under general anesthesia. My team of high risk doctors and the anesthesiologist in particular did not want to risk having to do a natural birth that required epidural. After my son was born, she stayed in the NICU for 3 months. I breastfeed him for an entire year and have been able to continue with my normal life. I know my story is vastly different from many other NMO patients, but not one of our cases will ever be the same. NMO still kicks my butt (extreme heat sensitivity, excessive sweating, chronic fatigue, elevated liver function since i started NMO meds) my liver never recovered. i still have residual foot drop and i cant actually run very quickly, but above all, Im still here, breathing, walking, living life, and raising my beautiful son who has been my greatest blessing. I dont think i will attempt to have more children because the risks are too high and i dont want to push my luck. Best wishes to all you awesome NMO patients.

    Comment by maria on June 16, 2015 at 7:13 pm

  8. Jenna

    Hi Maria,

    Thank you for sharing your story. Each patient has an unique version of how NMO has affected them. I’m glad to hear that you had a healthy pregnancy. Best of luck to you as well.

    Jenna

    Comment by Jenna on June 23, 2015 at 3:38 pm

  9. Jenna

    Hi Shona,

    I’m sorry to hear that you’ve had attacks. We’ve all had both mild and major attacks, some of which we’ve recovered from and others that we haven’t or have residual problems from. Each individual is different. Some of us have had attacks that recovered fully and some never get a major attack and go on through life without major issues. Hopefully the Imuran keeps things at bay for you. Best of luck.

    Jenna

    Comment by Jenna on June 23, 2015 at 3:37 pm

  10. shona

    thanks for replying me jenna…
    God bless u all..

    Comment by shona on July 16, 2015 at 9:53 am

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