Getting Pregnant with Multiple Sclerosis

Decades ago, women with MS were discouraged from having babies. I guess the thinking was that pregnancy could make the disease worse and it was assumed that we would all become disabled, which would make the already difficult task of raising children even harder. Given that many of the people diagnosed with MS are women of reproductive age, babies happened anyway. Turns out that MS relapses are typically fewer during pregnancy and we all seem to get by just fine raising our kids, despite different levels of disability.

The medical establishment has figured out that it was wise to really see what the best advice was to women wanting to conceive. 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, you MUST 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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