We asked the multiple sclerosis (MS) community to share any questions they had about contraception and family planning, and put those questions to a neurologist, Dr Melinda Magyari, and an MS nurse, Macarena Rus.
Deciding if you want to start a family is a big decision for anyone, but especially when you’re living with MS. Whether you want to have children or not there are a number of things to be aware of when it comes to contraception, family planning and managing your MS - that's why it's important to have open and honest conversations with your neurologist or MS nurse about your future plans.
Neurologists can have different opinions when it comes to managing MS and family planning. This is partly because it’s not fully understood how disease modifying therapies (DMTs) affect contraception and pregnancy, and there isn’t a clear set of guidelines to follow. Dr Melinda Magyari and Macarena Rus have helped to clear things up based on their own clinical opinions, so if you have any questions about your treatment, contraception or family planning, it’s best to talk to your neurologist or MS nurse.
Q: Why is it important to tell my neurologist or MS nurse that I am not planning on having a family? How could this impact how my MS is treated?
Melinda (neurologist): In my view, there’s enough evidence to suggest that some disease modifying therapies (DMTs) may not be safe during contraception and pregnancy. Because of this, some neurologists may be reluctant to prescribe those DMTs to women of childbearing age. Telling your neurologist that you are not planning to start a family can open up a range of treatment options.
Q: I am not planning on having a family. Will any disease modifying therapies (DMTs) prescribed by my neurologist affect my contraception?
Macarena (nurse): Based on the research I have seen, DMTs do not appear to affect how well contraception works. If you start a DMT, I think it’s important to use an effective method of contraception while taking the treatment. Later, if you decide you want to start planning a family, you should talk to your neurologist or MS nurse before you stop using contraception.
Q: I am a man living with MS, even though my girlfriend does not have MS, should we still be using contraception because I am taking a DMT?
Macarena (nurse): If you are not planning on having a family right now, you should ask your family doctor about the best contraception for you both, as a couple. This is especially important when you are taking a DMT as there has not been much research into the safety of DMTs in men who have fathered children. If at some point you do decide to start a family, it’s best you let your neurologist or MS nurse know.
Q: I am on the contraceptive pill, but I don’t want to take hormones for too long – what else can I do whilst I am taking a DMT?
Macarena (nurse): I feel it’s important for women living with MS who are taking a DMT to be on a method of contraception that’s best for them. If you aren’t happy with your current method of contraception or if you have any questions, it’s best to talk to your family doctor. Using an effective method of contraception is especially important when you’re taking a DMT as, for most DMTs, their safety during pregnancy and the possibility of congenital abnormalities isn’t fully understood. However, your neurologist and MS nurse will help you to weigh up the risks and benefits when it comes to managing your MS.
Q: I’m not thinking about having children right now but would like to at some point in the next few years – does my neurologist still need to know this?
Melinda (neurologist): What you tell your neurologist or MS nurse is completely up to you, but I would recommend that you talk with your neurologist about family planning. This is partly because it can affect the choice of DMT.
Q: How important is early control of MS with optimal treatment? Will my decision about having a family (now, in the future or never) affect this?
Melinda (neurologist): Optimal treatment of your MS before you start trying for a baby is important. Based on what I’ve seen and read over the past 20 years, it’s possible that risk of having a relapse can decline especially in the third trimester, and increases during the first three months after delivery. Telling your neurologist or MS nurse about your plans to start a family can help you to work together to manage your MS and help to reduce the risk of relapses after delivery.
Q: Is it safe to get pregnant while I am on treatment and will it be safe to try for a baby in the future?
Melinda (neurologist): If you’re planning to try for a baby, it’s always best to talk with your neurologist as there are a number of things to consider, such as the type of DMT you’re taking. I consider most DMTs unsafe during pregnancy and that they should be discontinued before trying to conceive. With some DMTs it can take a period of time before the treatment has left your body.
Q: I am a man living with MS – do I need to tell my neurologist whether I am planning to have children or not? Macarena (nurse): What you decide to share with your neurologist or MS nurse is completely up to you. Again, there hasn’t been much research into the safety of DMTs in men who are trying to conceive, so I would recommend that you tell your neurologist or MS nurse about your future plans, especially when it comes to starting a family. That way they can answer any of your questions and concerns.
Q: I would like to start planning a family and will need to stop taking my DMT. My other half is worried that by doing so, it will affect me and my MS. Does anyone have any advice they could share?
Melinda (neurologist): In my opinion, there’s evidence to suggest that MS itself does not increase the risk of adverse pregnancy outcomes and that pregnancy does not negatively influence the long-term course of the disease. Research suggests that pregnancy itself is associated with a lower frequency of relapse, especially in the third trimester, but there is a risk of relapse after you have had your baby. However, there are a number of things that can affect the risk of relapse after pregnancy and I think it’s important to consider them. For example, how well your MS has been managed in the lead up to your pregnancy – that’s why it’s best to let your neurologist or MS nurse know if you plan to start a family.
Q: If I do decide to get pregnant, what would happen after I had had the baby in terms of my MS treatment? How quickly would that need to be re-started?
Melinda (neurologist): In my opinion, this depends on a number of things. For example, whether you’ve had relapses the year before and during pregnancy and whether an MRI scan performed after delivery shows any new lesions. It also depends whether or not you wish to breastfeed for a longer time. It’s best to let your neurologist or MS nurse know if you have any questions you have about when to restart treatment, as there are a number of things for you both to consider.
Q: Will my MS get in the way of me being a good parent in the future?
Macarena (nurse): Living with MS is not going to stop you from being a good parent. Whether you live with MS or not, deciding to start a family is a personal decision to make with your partner. If you’re thinking of starting a family, it is important to talk about it with your neurologist or MS nurse because they provide you guidance and can answer any of your questions or concerns. There are many people living with MS who have chosen to have a family and they are very happy with their decision.
About our experts
Dr Melinda Magyari is a neurologist with over 20 years’ experience and is the author of a wide variety of published research on MS. Her experience spans all aspects of MS, but she has a keen interest in family planning. Melinda currently works at the Danish Multiple Sclerosis Centre in Copenhagen and is also a Director of the Danish Multiple Sclerosis Registry.
Macarena Rus is an MS Nurse with 10 years’ experience. Her experience spans all aspects of MS but her particular interest is in clinical trials, nutrition and bladder disorders. Macarena currently works at the Virgen Macarena University Hospital in Spain and sees on average 30 MS patients every week.
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