Family Planning in MS: Dispelling Myths and Encouraging Conversations
Rosalind C. Kalb, PhD, a clinical psychologist, offers her insights on how clinicians can address patient concerns about reproductive issues and MS.
Despite a substantial amount of data on successful outcomes of pregnancy in people with multiple sclerosis (MS), both newly-diagnosed and longer-term patients with MS continue to express a number of concerns and misconceptions regarding reproductive issues. A 2015 survey1 of patients with MS showed gaps in their understanding of the relationship between MS and pregnancy and the implications for treatment of relapses. It also showed a lack of understanding of the minimal impact of MS on fertility and the need for contraception to prevent unplanned pregnancy.
In an interview with Neurology Advisor, Rosalind C. Kalb, PhD, a clinical psychologist and consultant to the National MS Society and Can Do Multiple Sclerosis, offered her insights on how clinicians can address patient concerns about reproductive issues and MS — even if they don't ask the questions first.
Neurology Advisor: At what point should family planning be considered in MS?
Dr Kalb: It's fair to say that any young adult of childbearing or child-fathering age who is diagnosed with MS needs to let her or his doctor know if having children might be part of their future plans. Treatment decisions need to take those plans into account. If it's down the road, it helps the doctor plan what disease-modifying therapies (DMTs) to start with and how those options may be modified in the future.
Neurology Advisor: How can a clinician best introduce the topic for discussion?
Dr Kalb: There's a lot to cover during those early neurology visits, but as a psychologist I think any young adult should at least be asked at the time of diagnosis: Is having children on your agenda? Obviously, these plans evolve over time, and doctors have to revisit the subject periodically. Physicians should ask: Have your plans for starting a family or increasing your family changed since we last talked about it? Too often, the questions about family planning aren't asked, either by the patient or the healthcare provider. It's important for doctors to bring this up at the time of diagnosis and periodically thereafter.
It helps the doctor work effectively with the patient around her or his goals for having a family. You don't want your doctor to be blindfolded while trying to work with you to develop a treatment plan. There are no DMTs approved for use during pregnancy or breastfeeding. That being said, some MS specialists may prescribe a DMT — glatiramer acetate, which is pregnancy category B — during pregnancy if the risks of stopping MS treatment outweigh the pregnancy risks. The pregnancy registries for DMTs have provided useful information in this regard.
If a woman is experiencing active disease prior to becoming pregnant, the decision about becoming pregnant is a bit more complicated. The doctor may suggest that she wait to become pregnant until they have been able to get the disease as under control as possible and then resume treatment immediately after delivery rather than staying off the medication in order to breastfeed.
Young men should also alert their doctors because there are some medications they should not be taken while trying to conceive with their partner (eg, teriflunomide, which is pregnancy category X) and need to be totally out of a man or woman's body prior to conception.
Neurology Advisor: Is there anything notable about birth control use in patients with MS?
Dr Kalb: Young adults need to know there is nothing about MS that prevents conception — they have the same chances of getting pregnant as anyone else, and therefore they have to take the same pregnancy and sexually-transmitted disease precautions as any other couple. Any form of contraception is fine for women with MS; choosing a medication or method that is the most practical and effective for them is important for adherence — taking convenience and any symptoms such as reduced manual dexterity into consideration — that might have an impact on its use. Then, if and when they want to consider having a child, it's important to inform the healthcare team so they can begin the conversation about how best to manage the disease prior to, during, and after the delivery.
Neurology Advisor: Many patients have concerns about how MS might affect their fertility. What is the truth?
Dr Kalb: Fertility is not affected by MS, although there are many mistaken beliefs that have developed over the years. Women with MS used to be told that they should not get pregnant, that it would be bad for them. Men and women were told they would not be able to be effective parents.
Beginning in the 1950s, all the evidence began to point to the fact that it is absolutely fine for men and women with MS to have children. There is nothing about MS that interferes with conception, pregnancy, or delivery, and there's no evidence that having children leads to disease progression or makes disability worse over time.
Neurology Advisor: How should clinicians address patient concerns about disease relapse throughout the pregnancy process?
Dr Kalb: What we know for certain is that pregnancy hormones are protective, so a woman's risk for relapse drops significantly, particularly during the last trimester. She may feel good while pregnant, but in the 3 months following delivery, the risk for relapse returns to baseline, which means there is a higher risk for having a relapse right after delivery. A woman whose disease was active prior to conception is at significantly greater risk for a postpartum relapse than a woman whose disease was less active, but in general the risk for postpartum relapse is greater than the risk during pregnancy.
There is some evidence that suggests that if you breastfeed exclusively for several months your risk of a disease flare-up is reduced, but the results are mixed.
Neurology Advisor: How can patients with MS prepare for the added demands of pregnancy, childbirth, and parenting?
Dr Kalb: It's important to do a few things; namely, plan for it. Think about how you might feel and how your fatigue level might be, how much help you will need, how good your partnership is in terms of sharing responsibilities. Women with MS tend to have a lot of fatigue, and with the added fatigue of new mothering, patients and their partners need to think about what resources they can put in place to make sure the baby gets all the care he or she needs while the mother gets the rest she needs.
Paternity leave has been helpful for many new families, and the Family Medical Leave Act provides for any family member, including a new father, to take unpaid time off to help care for a family member.
It's also important for women who have a personal or family history of depression to pay careful attention to their mood following delivery. Depression is a common symptom of MS, and in combination with the risk of postpartum depression from hormonal changes, that puts a new mother with MS at significantly increased risk for depression.
One of the stresses I've heard quite a bit about related to delivery is that the anesthesiologist is put off from providing anesthesia because of a patient's MS. We encourage patients to talk to all members of the delivery team prior to delivery to avoid this kind of unnecessary glitch. There is a lot of literature that can inform the anesthesiologist in advance that all forms of anesthesiology are safe for women with MS; there are no restrictions.
Neurologists are not generally involved at the time of delivery, but good medical care should involve collaboration between specialties as needed. The obstetrician may want to contact the neurologist, or vice versa, prior to delivery to ensure the best continuity of care. Most neurologists see their patients every 6 months, so there will likely be a follow-up visit already scheduled.
Neurology Advisor: Do you have any other guidance for people with MS who are new parents?
Dr Kalb: Call an MS navigator at the National MS Society (800-344-4867
800-FIGHT-MS; www.nationalmssociety.org/pregnancy). They are there to provide emotional support and connect you with the resources you need at any time. It's important for doctors to have the 800 number and provide it to their patients.
- Wesley SF, Fabian M, Krieger S. Exploring patients' knowledge and misconceptions about multiple sclerosis and pregnancy. US Neurology. 2016;12:34–38.