The social network for people living with multiple sclerosis

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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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read more…

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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MSWorld logo

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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Part 1

Saying

Maximize MyMSTeam, by sharing a little bit about yourself. This two-part series is to help you get to know great people on MyMSTeam. When making valuable connections and friendships, it’s always valuable to start with oneself.

Begin With You

Getting started:

Consider the value of customizing your own profile on MyMSTeam. Whenever we hear something kind or insightful from someone, we have a natural tendency to want to know the person who said it. At a glance, a photo of yourself adds more personality, and builds trust in the community since your profile photo can be a large part of your identity on the site.
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