Back in May, while I was at the AF Registry Workshop in Atlanta and thinking about part two of this blog post on pregnancy, I had the pleasure of meeting Diana Johnson from a great organization called MotherToBaby (www.mothertobaby.org).
MotherToBaby is part of the Organization of Teratology Information Specialists (OTIS) of research and support services across the U.S. and Canada for women who are pregnant or considering becoming pregnant. In addition to offering evidence-based information organized by medication on their website, MotherToBaby also maintains a hotline so women can talk to experts one-on-one about the most current research on medications and pregnancy.
By dialing 1-866-626-6847, you can be in contact with a trained “risk counselor” within minutes. The majority of risk counselors are genetic counselors, with backgrounds in public health and pharmacy. Diana explains, “Risk counselors do not make recommendations, but they provide understandable information from the most current research.”
The information empowers women to work with their own doctor when making pregnancy and treatment decisions. The best part about these services is that counselors are willing to spend time answering all the questions that women have, even ones that doctors may not be as concerned or knowledgeable about. For example, women often call to ask questions about chemicals not in medications that they may be exposed to, such as hair dye, nail salon chemicals, marijuana and acne medications.
If you prefer something on paper that you can read, refer to, and even take to your doctor, MotherToBaby has created a list of helpful Fact Sheets that are free to download at http://www.mothertobaby.org/fact-sheets-s13037. In addition to “Medications,” there are Fact Sheets for “Herbal Products,” “Illicit Substances” and “Other Common Exposures.”
MotherToBaby also understands that many people would prefer not to speak over the phone about sensitive pregnancy information. The organization offers a service in which you may ask questions via private online chat. All you have to do is go to the chat link for the California MotherToBaby site at http://www.mothertobabyca.org/ and (“Click to chat!”) during posted hours. They will respond to your questions whether or not you’re a California resident.
What does all of this have to do with arthritis research? The information MotherToBaby provides comes directly from research. As I mentioned in my post last fall on pregnancy and arthritis medications, there is a shortage of information about this topic, and the information that is available often fails to reach the decision makers who need it most: women and their doctors. MotherToBaby is confronting this problem head on with various research projects.
The OTIS Autoimmune Disease in Pregnancy Project is an ongoing initiative that aims to study the effects of medication on pregnant women with autoimmune diseases. In fact, you can learn more and even sign up for the study here (http://www.mothertobaby.org/otis_survey-f161). This is excellent news for mothers who are worried about how their biologics and other medications may affect their pregnancy. OTIS has already made significant progress and will continue to learn and share more research findings as they become available. Information about medicines commonly used to treat autoimmune diseases can be found here (http://www.mothertobaby.org/factsheets-s15419).
As promised in my post last year, let’s focus for a moment on methotrexate and pregnancy. One of the side effects of methotrexate is a decrease in the body’s ability to break down folic acid. As you may know, folic acid is very important in the development of a fetus. So there are many risks to consider when you take methotrexate. Scientific evidence has shown that women who are trying to get pregnant should not be on methotrexate. In fact, studies have shown that it would be safest to be off methotrexate for six months before pregnancy.
The use of methotrexate has been directly associated with specific kinds of birth defects, though there is less concern about using methotrexate during breastfeeding. Nevertheless the American Academy of Pediatrics does not recommend methotrexate use during breastfeeding since small amounts can still pass into breast milk. For a complete list of MotherToBaby’s recommendations regarding methotrexate and pregnancy, click here (http://www.mothertobaby.org/methotrexate-and-pregnancy-p150081).
We are interested in hearing your thoughts about the topic of pregnancy and about MotherToBaby as a resource. Please comment below.
*Please note that any information in this article should not take the place of advice from your obstetrician/gynecologist or from your rheumatologist. It should equip you with some questions to discuss on your next visit.
Our Summer Associate Zach Landow from the University of Pennsylvania worked with Dr. Ben Nowell contributing background research and writing on this post.