So, you have MS and you want to get pregnant…

I was thrilled to be able to attend the teaching course on Pregnancy and MS during the 2014 Joint Meeting of the American and European Committee for Treatment and Research in Multiple Sclerosis.

I wanted to see if there was any new information – not for myself, since I do not plan to have any more children, but to see if things have progressed from “go ahead and try and we’ll see what happens.” When I conceived my twins 9 years ago, there were many fewer therapies available and some docs were still recommending that women with MS not have children. I figured that by now, there would be concrete recommendations and a flow chart to tell women exactly what they should do to make sure all things went smoothly. While there are still no concrete guidelines on how a woman with MS should be guided through pregnancy, enough data has been gathered that the following recommendations were presented:

Before trying to conceive:

  • It is important to discuss with your doctor and your family some of the MS-related factors impacting parenthood, including the impact that the MS will have on your ability to parent and the support system that you can call on. In addition, many people are very anxious that they may pass MS along to their children. To clarify this risk: If just one parent has MS, the risk is still very low (about 1-2%) that the child will develop MS.
  • There is no evidence that MS impairs fertility. However, some women (or their partners) experience sexual dysfunction, which can limit frequency of sex. While it is common sense, remember that you need to have sex to conceive a baby (unless you are undergoing some form of assisted reproduction technology treatment). If you are doing it the “old fashioned way,” and struggling with sexual dysfunction, you may want to consider finding a therapist that can help.
  • If you are on disease modifying therapies, ask your doctor what the recommended “wash out” period (a period of time without active treatment) is for your medication. Based on data, many docs are recommending a very short amount of time, such as one to two months off medications (three for mitoxantrone, four for alemtuzumab), before trying to get pregnant. Importantly, it is recommended that men on mitoxantrone and teriflunomide also stop these meds before trying to father a child. NOTE: Please talk to your doctor about when to stop your meds, as different medications carry different recommendations. 
  • If you are having relapses, it is recommended to try and stabilize this for 6 to 12 months before trying to conceive. Your doc may want to put you on Tysabri for that time (although this may increases your risk that you will have a relapse when you stop). Other approaches are pulse steroid therapy, where a woman is given Solu-medrol when she is menstruating (knowing she won’t conceive during this time), then trying to conceive during the following month.

When trying to conceive:

  • It is very important that you get pregnant as soon as possible after you terminate your disease modifying therapy. One recommendation is that women practice methods for predicting ovulation (taking basal temperature, monitoring cervical mucous, etc.) before stopping meds, so they know when their optimal times for trying to conceive are. If you do not get pregnant within 3 to 6 months, your doctor may recommend that you seek fertility treatment (as opposed to waiting the usual 12 months).

While pregnant:

  • If you get pregnant while taking disease modifying therapy, DO NOT PANIC! I cannot stress this enough. Data is showing that most of the therapies do NOT increase the risk of miscarriage or birth defects. If you become pregnant while on one of the MS medications, immediately contact your doctor to find out what he or she recommends.
  • If you have a relapse during pregnancy, you can be treated with Solu-medrol or IVIG, as these do not appear to present any danger to the baby.

After delivery/while breastfeeding:

  • Be aware that women with MS are at a higher risk for postpartum depression. If you feel sad or have little interest in your newborn, I strongly suggest you seek professional help.
  • If a woman has not had a relapse in the year before getting pregnant (or during pregnancy), she can certainly breastfeed. A recent meta-analysis showed that women who breastfed had slightly fewer relapses.
  • If a woman had high disease activity before getting pregnant or during pregnancy, it is recommended that she begins taking MS medication within 10 days of delivery.

Bottom line: Things have become much clearer and less scary since I was pregnant. Your neurologist should be your partner when you are considering trying to start or expand your family, with the goal of making sure that you have the safest pregnancy possible for you and your child.

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Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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  • unogem  Sep 11, 2014 7:13 PM
    I was diagnosed 6 months before I got married, and the prospect of having children was daunting. However, my neurologist was very supportive of us having children. She gave me the facts (many which you discuss above) and recommended fertility treatments when it didn't happen after several months. She said that, even after 16 years, she uses me as an example of a success story. My pregnancy was happily uneventful, despite becoming pregnant with twins. I did have a flare within three weeks of delivering my children, but it was no worse than any of the other flares I experienced before becoming pregnancy. Thank you for sharing this with us!
  • Sasha   Sep 12, 2014 2:48 AM
    I have rrms I've been diagnosed since 2012. I am 35yrs old & now 5mths pregnant, With my 1st child.
    I didn't take any of the medication that was on offer except strong pain killers & smoked weed every day.
    Since becoming pregnant I haven't smoked or taken any meds. I still have pains in my legs & feet but the pregnancy is goin very well. I can not wait to see & hold my baby it's all I ever wanted. I will except the pain that ms causes as all I've ever wanted is to be a mom. I know I may have some tuff days after the birth, but for me it's worth it. I will have help from family & friends I am sure I we will be ok.
    If having a child is what u want then I say go for it!!!
  • Aragono  Sep 12, 2014 1:38 PM
    Thank you for sharing your stories, we're planning on trying next month and honestly I'm scared shitless. It is really comforting to hear from moms that have gone through it or who are pregnant now. THANK YOU!
  • ellie   Sep 13, 2014 12:04 PM
    I was diagnosed in 2012 and recently my husband and I have been trying to conceive. I found out I was pregnant last month and a week later miscarried. We don't know why but its not discouraging us from trying again. Thank you for all the insight on getting pregnant with MS. Here's to hoping for a viable pregnancy!
  • Kristina   Sep 18, 2014 8:09 AM
    I was diagnosed with MS in 2009 and gave birth to my daughter in July 2014. I stopped my medication a month after discovering I was pregnant. I didn't have any problems throughout the pregnancy and not until my daughter was two months old and I was breast feeding did I have an issue due to MS. I haven't been on medication since October of 2013 and since I am still currently breast feeding have not gone back on medication. I am dealing with a flare up now.......steroids did not help and still waiting the optic neuritis to heal, but I have a beautiful daughter who makes me very happy!
  • jensequitur   Oct 24, 2014 5:11 PM
    I was diagnosed with RRMS in 2007, and spent the next five years going through flares and recovering from them. I had wanted to have a child before my diagnosis, but because I felt so awful I decided it would be a bad idea. In 2012 we decided to go ahead and try for a kid. I felt much better, and hadn't had a flare since 2009. I discontinued my DMD, and eliminated all medications that weren't safe for pregnancy. Because of my age (41) and being a first-time mother, we weren't able to get pregnant right away. I got an IUI in April of this year, and I am now 25 weeks pregnant. Being pregnant at 43 is no problem - I'm taking heparin to reduce the risk of miscarriage, and supplements so the child will be healthy and normal. What I worry about what will happen at birth, and afterwards. I have lesions in the pons and medulla that could cause some autonomic dysfunction. My high risk doctor plans to administer IV steroids or IVIG to reduce the risk of a flare, and I will need to be on heparin for three months after birth. So far everything has been perfectly normal. I just started feeling him kick on Sunday, which is exciting!
  • Brandy   Nov 28, 2014 11:04 AM
    i am doing a kit from conceiveeasy - came with a prenatal type supplement, the basal body thermometer, chart and ovulation tests.