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Elizabeth

 

By Elizabeth Salas, MPH, Teratology Information Specialist, MotherToBaby California

 

 

Whether you are planning pregnancy or currently pregnant, some of the most important decisions you make will be regarding medication use during pregnancy. For many women with multiple sclerosis (MS), navigating through different sources of information and deciding on treatment during pregnancy can be difficult. In addition to talking to your providers, you will want to be informed of the latest and most accurate information on medication use during pregnancy. Let’s begin with the basics.

 

How Do We Know A Medication Is Safe During Pregnancy?

To answer this question, we will want to know the following:

 

  • How much information is known about my medication when it is used during pregnancy? What is the quality of that information?

 

The quality and quantity of the information published is very important. For some medications, there may be no human pregnancy reports and information may be limited to animal studies. Other times individual cases of pregnant women are reported, but without being a part of a larger study or group of cases, we cannot draw conclusions based on these types of reports. Since we cannot test the safety of new medications in pregnant women, we rely mostly on observational pregnancy studies. An observational study follows pregnant women who have taken a medication before they knew they were pregnant or who took the medication during pregnancy because their medical condition required ongoing treatment during pregnancy.

 

  • Have any problems been reported in pregnancy or for the baby, including birth defects, newborn complications, or long-term effects?

 

Considering all the research studies on a specific medication, we want to know if the information suggests the medication could increase the risk for birth defects, and if a pattern of birth defects has been identified. The key words here are increase and pattern. In every pregnancy regardless of whether she is taking any medication or not, a woman starts out with a 3-5% chance of having a baby with a birth defect; this is called the background risk.1 So a medication that increases the risk of birth defects above the background risk could be concerning. A pattern of birth defects is important because most medications or exposures that affect a developing baby usually cause a distinct pattern of birth defects during pregnancy.

 

What Are The Current Recommendations For Disease Modifying Treatments During Pregnancy?

 

Currently there are no official recommendations for treatment of MS during pregnancy because there is not enough research to establish the safety of disease modifying treatments (DMTs). So decisions to use or continue DMT treatment during pregnancy should be made on a case-by-case basis. Sometimes the benefits of using a medication during pregnancy may outweigh the risks; only you and your healthcare provider can determine if that’s the case for you.

 

What Do We Know About Disease Modifying Treatments For MS During Pregnancy?

 

There are nearly a dozen DMTs available for the treatment of MS. More is known about older medications called beta-interferons (e.g., Betaseron®, Avonex®, Extavia®, and Rebif®). Studies of pregnancies exposed to a beta-interferon did not suggest an increased chance for birth defects above the background risk.2 In other words, the birth defects seen in these pregnancies were not above what is expected in the general population. In addition, no pattern of birth defects was identified. Because information is still limited we cannot determine the safety of these medications, but to date the information has not suggested a risk for women exposed to beta-interferons very early in pregnancy.

 

Copaxone® (glatiramer) has not been shown to increase the risk for birth defects; but while the data are reassuring, this is based on limited study of the drug in human pregnancies, so further studies are needed.3 Tysabri®(natalizumab) has also not been associated with an increased risk for birth defects to date, but again information is limited. Also, one study suggested that newborns exposed to Tysabri® may be at risk for complications including reduced red blood cells, platelets, and white blood cells. Red blood cells carry oxygen to the body, platelets play an important role in blood clotting, and white blood cells are a critical part of the immune system that fight off infections. It is expected that more of the medication crosses the placenta later in pregnancy, meaning the effects may be greater during later stages of pregnancy – but more studies are needed to determine the safety of Tysabri® in pregnancy.2

 

No human pregnancy studies have been published on Tecfidera®(dimethyl fumarate) and Gilenya®(fingolimod), but animal studies suggest possible risk in pregnancy.4 Until more information is available, the safety of these treatments in pregnancy is unknown.

 

Aubagio®(teriflunomide) and Novantrone®(mitoxantrone) have also not been studied in human pregnancy. Animal studies suggest an increased risk of birth defects, so until more data are available it is recommended that women using these medications use appropriate contraception4 to prevent pregnancy, as the risk or safety of these medications in human pregnancies cannot be determined at this time.5,6 Women taking teriflunomide who are planning a pregnancy may receive a separate treatment to reduce the levels of medication in their body before they become pregnant; this treatment may also be used with pregnant women who took teriflunomide before they knew they were pregnant.

 

How Can We Learn More About MS And Treatments During Pregnancy?

We have a lot to learn about MS during pregnancy as well as the safety of the medications used to treat it. The information available on medications and treatments relies on pregnant and breastfeeding women who are willing to share their experience with others in a confidential manner, so we recommend that all pregnant women participate in a pregnancy registry regardless of their medication use. To better understand medication safety, it is important to compare different groups of pregnant women including those with MS who are not taking medication, those with MS who are taking medication, and those who do not have MS. In short, all pregnant women are needed to help us find answers! Pregnancy registries are strictly observational, meaning that you are not asked to change anything about your normal routine, including the medications you are taking. Contact one or more of the below registries to learn more:

 

Multiple Sclerosis Pregnancy Registry – Studying all treatments for MS: (877) 311-8972

Aubagio® Pregnancy Registry: (877) 311-8972

Avonex® Pregnancy Registry: (800) 456-2255

Betaseron® Pregnancy Registry: (800) 478-7049

Tysabri® Pregnancy Exposure Registry: (800) 456-2255

Tecfidera® Pregnancy Registry: (800) 456-2255

Gilenya® Pregnancy Registry: (877) 598-7237

 

Where Can I Get More Information?

 

We encourage you to speak with your doctor to discuss treatments, options, and what you can expect during pregnancy. For more information about any of the medications discussed above or any other exposures during pregnancy or lactation, you can speak with a MotherToBaby counselor by calling us toll free at (866) 626-6847. Our service is FREE and confidential. If you’d like to know more about current MS and pregnancy registries, please contact one of our MotherToBaby Pregnancy Studies experts toll free at (877) 311-8972.

 

Stay tuned for our next blog, which will review what we know about MS treatments while breastfeeding.

 

 

 

Elizabeth Salas is the Lead Teratology Information Specialist for MotherToBaby California, a non-profit that provides information to healthcare providers and the general public about medications and more during pregnancy and breastfeeding. She is based at the University of California, San Diego, and is passionate about the work MotherToBaby is doing to promote healthy moms, healthy pregnancies and healthy babies.

Interested in more information about MS and pregnancy? Check out MotherToBaby’s March 2014 blog, “MS: The Diagnosis that Doesn’t Mean Missing Out on Motherhood!” and the December 2014 blog, “For Women with MS: Making Decisions about Pregnancy, Breastfeeding, and More

 MotherToBaby is a service of the international Organization of Teratology Information Specialists (OTIS), a suggested resource by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about medications, vaccines, diseases, or other exposures, call MotherToBaby toll-FREE at 866-626-6847 or call the Pregnancy Studies team directly at 877-311-8972. You can also visit MotherToBaby.org to browse a library of fact sheets, as well as visit our Multiple Sclerosis and Pregnancy page at MotherToBaby Pregnancy Studies, www.PregnancyStudies.org.

 

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References:

  1. Teratology Primer, Second Edition. Teratology Society. (2010). URL: http://www.teratology.org/primer.asp
  2. REPROTOX® [database online]. Reproductive Toxicology Center. (2014). Updated April 2014 (Interferons). URL: http://www.reprotox.org/Default.aspx
  3. Tsui, A., & Lee, M. A. (2011). Multiple sclerosis and pregnancy. Current Opinion in Obstetrics and Gynecology, 23(6):435-9. doi: 10.1097/GCO.0b013e32834cef8f.
  4. Clinical Pharmacology [database online]. Tampa, FL: Elsevier/Gold Standard, Inc.; 2014. URL:http://www.clinicalpharmacology.com
  5. Houtchens, M.K., & Kolb, C. M. (2013). Multiple sclerosis and pregnancy: therapeutic considerations. Journal of Neurology, 260(5):1202-14. doi: 10.1007/s00415-012-6653-9.
  6. TERIS® [database online]. Teratogen Information System, University of Washington. (2014). Reviewed 2014 (Teriflunomide). URL: http://depts.washington.edu/terisweb/teris/

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Elizabeth

By Elizabeth Salas, MPH, Teratology Information Specialist, MotherToBaby California

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 If you have Multiple Sclerosis (MS) and are currently pregnant, breastfeeding, or planning a pregnancy, where do you go when you have questions about MS or MS treatments? In this day and age, the first place you might go is the Internet. With no shortage of information at our fingertips, it may seem the answers to all of our questions are just a web search away. But when it comes to chronic conditions and treatments in pregnancy, reliable and accurate information isn’t always easy to find, and the answers may not be so simple. So let’s try a different approach, shall we? First, let’s start with the facts!

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The Good News

Studies about MS and pregnancy are encouraging. To date they show MS does not affect a woman’s ability to get pregnant. For most women with MS, they are less likely to have a relapse during pregnancy especially in the 3rd trimester. Research shows pregnancy does not worsen MS or the progression of the disease1. MS during pregnancy also does not increase the risk for birth defects, and does not increase the risk of major complications in pregnancy, during delivery, or for the newborn2. In fact, some studies suggest pregnancy may have a protective effect for women, by slowing down or reducing the progression of MS – although more research is needed to confirm this finding3.

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Making Progress in Treating MS

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 Ten years ago only a handful of treatments were available to treat MS. These medications, such as Betaseron® (Interferon Beta-1b) or Avonex® (Interferon Beta-1a), are called disease modifying medications because they slow down the natural course of MS while reducing the number and severity of relapses. Today there are twice as many disease modifying medications available – but the big question here is what do we know about these treatments during pregnancy or lactation?

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The somewhat frustrating answer is that there is very little information about the safety of the newest medications during pregnancy or lactation. For this reason, standard practice has generally suggested women with MS stop treatment with disease modifying medications at least 1 menstrual cycle prior to attempting to conceive4. Older medications used to improve symptoms during a relapse, such as Solu-Medrol® (methylprednisolone) or prednisone, have been around since the 1950s5 and much has been published on their use in pregnancy6. (For more information about prednisone/prednisolone in pregnancy and lactation, see our Fact Sheet.) Regardless of which medications you may be taking, it’s important for women with MS to plan their pregnancies and discuss treatment and options with your doctor before trying to become pregnant.

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But what if your pregnancy, like nearly half of all pregnancies in the United States, was not planned? You may still have many questions about how your MS – and any medication you may be taking to treat it – could impact your pregnancy, such as: Could my medication have an effect on my developing baby? Will additional tests be needed during pregnancy to make sure my baby is all right? Should I continue taking my MS medications during pregnancy? If I stopped my medication, when can – or when should – I start taking them again? Can I breastfeed while taking these medications? The questions may seem overwhelming, but the good news is there are specialists who can answer your questions and they are just a phone call away!

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Making The Call

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Hello and thank you for calling MotherToBaby. We’re here for you!

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I am a counselor with MotherToBaby, a group of experts dedicated to providing women, healthcare providers, and the general public with accurate and up-to-date information on exposures during pregnancy and breastfeeding. We answer questions about everything from medications and cosmetics, to chronic conditions, like multiple sclerosis. Our service is FREE, confidential, and available for you. To speak to a counselor, call us toll free at (866) 626-6847.

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Making A Difference

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Every pregnant woman wants a healthy pregnancy. After personally talking to pregnant women with chronic conditions for nearly a decade, one thing has become very clear: we need better answers about how medications affect pregnancy. MotherToBaby has a follow-up program for pregnant women with MS, regardless of whether they are currently taking medication. We are learning more every day thanks to pregnant women with MS who are sharing information about their experiences. If you’d like to know more about current programs on MS and pregnancy, please contact one of our MotherToBaby Pregnancy Studies experts toll free at (877) 311-8972. You can help us make a difference, and together we can find the answers.

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Stay tuned for our next blog, which will review the latest information on disease modifying medications.

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Elizabeth Salas is the Lead Teratology Information Specialist for MotherToBaby California, a non-profit that provides information to healthcare providers and the general public about medications and more during pregnancy and breastfeeding. She is based at the University of California, San Diego, and is passionate about the work MotherToBaby is doing to promote healthy moms, healthy pregnancies and healthy babies.

Interested in more information about MS and pregnancy? Check out MotherToBaby’s March 2014 blog, “MS: The Diagnosis that Doesn’t Mean Missing Out on Motherhood!

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MotherToBaby is a service of the international Organization of Teratology Information Specialists (OTIS), a suggested resource by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about medications, vaccines, diseases, or other exposures, call MotherToBaby toll-FREE at 866-626-6847 or call the Pregnancy Studies team directly at 877-311-8972. You can also visit MotherToBaby.org to browse a library of fact sheets, as well as visit our Multiple Sclerosis and Pregnancy page at MotherToBaby Pregnancy Studies, www.PregnancyStudies.org.

Infographic MyMSTeam RRMS Treatments

In just one year, MyMSTeam has grown from 30 people with multiple sclerosis in the San Francisco Bay Area to nearly 20,000 MS-ers across North America. Since we launched MyMSTeam.com in the Spring of 2013, we’ve been asked by spouses of people living with multiple sclerosis, and the parents of children with multiple sclerosis to be permitted to join the site. We’ve also received requests from those diagnosed with MS to allow their loved ones to join. With the utmost respect for their wishes, we waited until we could ask the MyMSTeam.com community (originally created just for people diagnosed with MS) what they wanted.
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A few months ago we shared the results of a MyMSTeam survey on the topic of clinical research.  85% of you who responded to that survey said you’d like MyMSTeam to notify you of relevant clinical trials in MS as they come up.   We took that to heart.    As a first step, we recently partnered with Biogen Idec to share news of the ALLOW study which focuses on people with relapsing-remitting MS who are currently taking a standard interferon beta (IFN-β) therapy such as AVONEX® (interferon beta 1b), BETASERON® (interferon beta 1a), or Rebif® (interferon beta 1a).  The study will be conducted in select cities around the United States (a complete list of which is at the bottom of this post).
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The following is a personal story from Kate, a member of MyMSTeam, the social network for those diagnosed with multiple sclerosis. With her permission, we’ve shared the story she shared with thousands of MS-ers on MyMSTeam.  If you’ve been diagnosed with MS, go to www.MyMSTeam.com and connect with others who ‘get it.’  Thousands from all over the country are here to share not only their stories, but their daily lives: the good days and bad days of living with MS. 

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logoms

Summary: In a recent survey of the MyMSTeam community, 85% of respondents said they’d want MyMSTeam to notify them of upcoming clinical trials in MS that may be relevant to them.  While the overall interest in trials is strong,  awareness and actual participation is relatively low.  74% report that their doctor has never talked to them about participating in clinical research for new MS treatments.  See below for full survey results, and what we at MyMSTeam are doing to help our members learn about trials that could be relevant to them.
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The following is a personal story from Kris, a member of MyMSTeam, the social network for those diagnosed with multiple sclerosis. With her permission, we’ve shared the story she shared with thousands of MS-ers on MyMSTeam.  If you’ve been diagnosed with MS, go to www.MyMSTeam.com and connect with others who ‘get it.’ Thousands from all over the country are here to share not only their stories, but their daily lives: the good days and bad days of living with MS. 

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The following is a personal story from Anissa, a member of MyMSTeam, the social network for those diagnosed with multiple sclerosis. With her permission, we’ve shared the story she shared with thousands of MS-ers on MyMSTeam.  If you’ve been diagnosed with MS, go to www.MyMSTeam.com and connect with others who ‘get it.’ Thousands from all over the country are here to share not only their stories, but their daily lives: the good days and bad days of living with MS. 

www.MyMSTeam.com

Anissa, one more inspiring member on MyMSTeam, the social network for those diagnosed with MS.

 Anissa’s Story

I still clearly remember the last time I was able to run. June 23, 2006 started out to be a great day. After breakfast the kids and I decided to go outside and play. We started a touch football game. We were all running from one side of the yard to the other, throwing the ball. Still, clearly in my mind are the way the clouds looked that day, high wispy, they looked as if God himself had taken a paintbrush and purposely left streaks across the sky. There was nothing ominous about them, just pure beauty. My legs were carrying me from one part of the yard to the other, chasing the kids. The sounds of the laughter coming from them will forever be etched in my mind and soul.
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We at MyMSTeam are excited to announce our new partnership with MSWorld, a leading multiple sclerosis support organization and community. Together, the organizations will continue their pledge to empower people living with multiple sclerosis.

“We are proud to align with MSWorld, an organization that has pioneered the way for those living with MS to find resources and vital information,” said Mary Ray, co-founder of MyMSTeam. “MSWorld shares our passion for bringing together the best MS resources and contributing collectively to the greater MS community. MS is a chronic condition that is filled with more questions then answers. Our complementary services work together to bridge that information gap and provide the MS community the support they need from those who ‘get it’.”
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