Living with a chronic condition requires that you, the patient, become an expert in managing your own health. Multiple sclerosis is a disease that also requires you learn vast amounts of information to be able to better advocate for yourself.
As you know, multiple sclerosis is a disease which affects the central nervous system - the mission control center of the brain and the high-speed telecommunication fibers bundled through the spine - which in turn can impact practically any area of the body. Not only does MS affect nerves throughout the body, treatments for MS impact quality of life and may influence major life decisions.
MS is most often diagnosed in younger adults during childbearing years between the ages of 20 and 40. I was officially diagnosed at the age of 37 after experiencing blinding optic neuritis at age 31. Parenthood was not on my radar screen when I was diagnosed, but it’s good to know that MS does not affect fertility or the ability to raise a child.
With the early drugs approved to treat MS, such as beta interferons and glatiramer acetate, becoming pregnant was less of a concern. Anecdotally, it seems that many patients would continue taking their medication until pregnancy was confirmed. Then they would go off therapy until after the baby was born and establish a plan to continue medication after the birth or time spent breastfeeding.
(photo credit: Ambro)
Some of the newer medications are contraindicated with pregnancy, including drugs that must be stopped for a period of time before a patient attempts to become pregnant, such as Aubagio or Gilenya. However, approximately half of all pregnancies are unintended, whether mistimed, unplanned, or unwanted, according to the CDC. So it is important to do some planning in advance to prepare yourself for the unexpected.
Talking to Your Doctor
Neurologists have much area to cover in a brief period of time during appointments. Family planning and reproduction are topics that likely do not rank in the top ten things to discuss with your MS doctor.
My neurologist may have asked once, ten years ago, whether starting a family was something I needed to discuss. Currently, my rheumatologist asks during each appointment whether my husband and I plan to have children and whether we are using consistent birth control as one of my medications is known to cause birth defects and miscarriages. It doesn’t matter that I’m almost 47 years old, my doctor still asks.
In addition to discussing symptoms and disability, please talk to your doctor about issues related to sexual activity, pregnancy, medication use, contraception, and family planning. Listed below are medications, commonly used with MS patients, which have been categorized as carrying some level of risk to an unborn fetus. Research other medications on websites such as drugs.com.
If the topic of pregnancy, family planning, and MS medications is one which concerns you, please take time during your next doctor’s visit to discuss these concerns. If you do become pregnant while taking one of these medications, you can contact patient pregnancy registry programs to report drug exposure.
MS Drugs and Pregnancy Risk
Pregnancy Category B drugs, such as Copaxone and Glatopa, are medications for which “animal studies have revealed no evidence of harm to the fetus; however, there are no adequate studies in pregnant women OR animal studies that have shown an adverse effect, but adequate studies in pregnant women have failed to demonstrate a risk to the fetus.”
Pregnancy Category C drugs, such as Avonex, Rebif, Plegridy, Betaseron, Extavia, Tysabri, Lemtrada, Gilenya, Tecfidera, are medications for which “animal reproduction studies have shown an adverse effect on the fetus and there are no adequate and well-controlled studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.”
Women of childbearing potential who take Gilenya should be encouraged to use adequate methods of contraception during and for at least two months after stopping therapy. Thyroid disease poses special risks in women who are pregnant and taking Lemtrada.
Other frequently used drugs to treat MS symptoms, such as Ampyra, Neurontin, Wellbutrin, baclofen, and Nuvigil, are also listed as Pregnancy Category C medications.
Pregnancy Category D drugs, such as Novantrone, are medications for which “animal data have revealed evidence of fetotoxicity (low fetal birth weight and retarded development of the fetal kidney) and premature delivery. There is no data from controlled human pregnancy studies. Use of mitoxantrone during pregnancy is considered contraindicated. Even if they are using birth control, women with multiple sclerosis who are biologically capable of becoming pregnant should have a pregnancy test (and the results should be known) before receiving each dose of mitoxantrone.”
Commonly used benzodiazepines, such as diazepam or alprazolam, are listed as Pregnancy Category D medications.
Pregnancy Category X drugs, such as Aubagio, are medications for which “use of adequate methods of contraception by both females and males is recommended during and for two years after stopping treatment.”
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.