Episode 76 with Dr. Dessa Sadovnick on planning for pregnancy and beyond in MS
Earlier diagnosis means people can make more life decisions, including pregnancy planning, with knowledge about their multiple sclerosis, rather than being unaware of their condition.
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Host — Dan Keller
Hello, and welcome to Episode Seventy-six of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m Dan Keller.
Pregnancy presents special considerations for women with MS. Beyond the medical and pharmacological issues, there are social, socioeconomic, and parenting concerns. Dessa Sadovnick, MD, PhD, a professor of medical genetics and neurology at the University of British Columbia in Canada, spoke on issues ranging from pregnancy planning through the postpartum period at the World Congress of Neurology in Santiago, Chile, in November, where we met up.
Interviewer – Dan Keller
Let's talk about gender and hormonal issues in pregnancy. What are some of the things you're looking at now?
Interviewee – Dessa Sadovnick
Well, in terms of gender, it's really been interesting the fact that initially it was actually thought that men may have MS more often than females. And now, of course, it's very well established, as with many other autoimmune diseases, that females are affected much more than males. The question is why? And there's a lot of research being done into hormones, especially the estrogens, the estradiols, to try to see how that relates to disease onset, clinical course, etc. But again, there's no really firm answers.
We do know that the hormonal changes during pregnancy do seem to reduce the number of relapses during gestation, and as soon as you deliver, the relapse rate goes up very high. So this is one area of big interest. There's been some recent work published on menopause, and it does not seem that women who have MS have menopause earlier than other women or later than other women. There doesn't necessarily seem to be a direct effect between clinical course and menopause, other than to say that a lot of the symptoms do overlap. So you have to be very careful, as a clinician, to decide whether you're talking about MS-related symptoms or symptoms that might be amenable to treatment just for regular menopause.
Puberty is a very key period in MS. We know that you can get MS prior to puberty, but it is recognized now in the pediatric population that the group who have it prior to puberty do have a more similar female to male ratio. It's only once puberty hits that you have the excess in the females.
Does pregnancy permanently change physiology compared to the pre-pregnant state, or do people go back to their baseline relapse risk after some point?
There is no evidence to say that having a pregnancy will change your long-term course or your outcome after a given period of time. It seems like people on the whole, and everything is always on the whole because there's always the exception, but in general, you tend to go back to what you were like before, taking into account that, after pregnancy, you'll have had a longer disease duration. Just an example, if it takes you a year to become pregnant, then nine months pregnancy, three months postpartum, the next time you look at it you're two years since before you tried to get pregnant; so you're two years more into the disease. But there's no evidence that pregnancy harms the long-term outcome of MS, and there's no evidence that not getting pregnant is beneficial for women either.
Is there a physiologic explanation for the higher relapse rate after pregnancy? Is it easily identified, or is it pretty hypothetical?
Well, it's thought to be related to the changes in hormones as soon as a woman delivers. But there's nothing that can mark it to say this woman's going to get it, this woman's not going to have it. You know, there's no marker that's going to say who's going to have a relapse after delivery, who isn't.
Even though there's not much data right now about many of the drugs used in MS and pregnancy, women are advised oftentimes not to be on the drugs, but they also don't immediately get pregnant. So do they have a long period potentially of risk of relapse, and does that affect the long-term course eventually?
Well, there's been controversy in the literature about whether the number of relapses a woman has while she has relapsing-remitting MS affects her emergence into secondary progressive MS. So there's been controversy at the findings about whether the number of relapses predicts how soon you're going to go into a progressive phase or not. As far as I'm aware, the most recent information suggests that they might be two independent factors. So, it's a hard question to answer.
Obviously, the drugs don't cure MS. So it's not that you're going to prevent MS by taking the drugs or stop MS dead in its course by taking the drugs. You're taking a risk. [With] any relapse, you don't know whether there's going to be a complete recovery or a partial recovery. The more relapses you have, the harder everything is in day-to-day life and coping and recovery, and getting pregnant is not something that happens instantaneously. So it's a big decision that women do have to make. And there's no real easy answer for saying who will do well being off the medication for awhile, who won't do well being off for awhile.
It's an informed decision that people have to make. And we say it's very important that if you're planning a pregnancy, to really look at all the information that's relevant to your particular situation and make an informed decision about your situation. There's no general answer for everybody. And we've come up with some reproductive counseling models that deal with the whole area of reproduction and reproductive planning.
Now, one thing that I find that people often don't tend to think about is that they think of getting pregnant in terms of conceiving, having a pregnancy, delivering, and the three months postpartum. But they forget the fact that once you do have a child, there's a lot of commitment you have for a long time moving forward. It's not just your three-month postpartum relapse rate that you're concerned about. And people have to be very cognizant that if they do have a chronic disorder, that this will have some impact on their socioeconomic status, on their ability to parent, on relationships; all this has to be taken into account. And two of the things that we often say to people who are planning a pregnancy is: One, remember that it's a long-term commitment; and two, as a parent, instead of focusing so much on what you can't do because you're a parent who has MS, maybe you should focus more on what you can do. And I think that's a very good attitude to have.
I remember many years ago we had a woman who was just so upset, because in the city she lived in there was a big annual festival fair every year. And she'd take her children there, and by the end of the day she was hot, she was tired, she'd have a relapse, she'd be in bed, but she felt it was her duty, as a parent, to take the children to this festival. So we just talked about it from a practical point of view, nothing specifically medical or anything like that. And said, well, what would happen if you went with your kids with someone else; you stayed in a nice shady place, you had, you know, something cold to drink. Your kids went off and did all the running around, and then they'd come back and report to you what they're doing. And, you know, try a day like that instead of you're being the one to kill yourself running around with them to all the activities. And she came back to the clinic a couple of years later, and she says, you know, it was such a difference. The kids had a good time, and instead of my being in bed for the next two weeks, we went out for dinner after, and life continued.
So I think that that's so important when you're talking about planning pregnancies is you have to think forward. You know that for anybody having a baby in the newborn period, it's tiring, it's stressful, not only for just the mother, but also for the father whether he has MS or not. So if you know this is going to happen, before you get to the point where you're in such a state of exhaustion and relapses start happening, maybe plan ahead. Not everybody can afford nannies or housekeepers or things like that; that's a fact of life. But there's nothing to say you can't talk to friends and work out a system where you get a bit of extra help in advance, not just wait till you hit the crisis mode.
And I suppose in the early postpartum period you could be very sleep-deprived.
You can be very sleep-deprived, and then you have to start thinking. If you're a father whose wife has just had a baby, maybe you should try to sleep in a different room, not worry about getting up when the baby gets up during the night. If you're a mother who has MS, maybe you want to reconsider breastfeeding. Maybe you want to consider expressing, so that you're not up constantly with the baby. You have to be practical. And I think that that is the big factor is: in theory there's so many things you're supposed to do, but you actually have to be practical. The fatigue component with a newborn is not going to go away regardless of if you have MS or not. So if you know in advance you have MS, and it's going to be more of an issue, why not try to make some practical plans?
You had mentioned the changing sex ratio mainly because more women are being diagnosed with MS. Is it that there is more MS or better diagnosis or some other reason for this increase in the gender ratio with women predominating?
Looking at it in terms of a gender ratio, you're basically taking out factors, such as improved diagnostic techniques. So what we're starting to think is that females react differently to environmental triggers than do males, and this could be a reason for the increase in females. Women are living a very different life today than they did even 30 years ago in terms of occupation, being out of the house, exposures. Women react differently to vitamin D. Women have different smoking habits in reacting. So we're thinking that what's happening is that the female is actually responding to environmental factors in a different way now or being exposed more than she was maybe a few decades ago.
Do women live proportionately longer with MS? Could they just be getting older, and the men aren't getting as old, and that changes the ratio at that end of the spectrum?
Life expectancy does not really seem to be dramatically altered in multiple sclerosis for males or for females. We've done studies with actuarians from life insurance companies looking at this, and MS really doesn't kill you. So I don't think life expectancy is a factor.
Anything interesting or important to add?
Well, I think that a big difference is that there used to be a long lag time from the onset of the MS symptoms until you were diagnosed. So a lot of life decisions, whether it was dating, partnering, reproduction, or in that period when you really didn't know that you had a diagnosis, so in many ways ignorance was bliss. You didn't really have to make decisions.
Now, of course, with the new techniques, people are getting diagnosed so much earlier in the disease. And they're being told that you have MS, you'll do fine, you know, there are therapies you can try. You're still a person who has a life to lead. You're not an MS patient for your whole life. So but every decision they make they have to go out and decide disclosure and how to deal with the fact that they now have a diagnosis. It's not this period of ignorance is bliss. So let's just take, again, going back to the pediatric example: you're a teenage, you're in university, you're on the dating scene. When do you tell someone you have MS, do you tell them? Do you not tell them? You're someone who's in their 20s: you have a diagnosis of MS, you're dating, you talk about having a permanent relationship and going on to have children together. When do you drop the bomb that you have MS? When do you tell it to employers? When do you tell it to in-laws? You know, when do you say this? That period of being ignorant is really gone now. And so, how you react, how society reacts, is something that we really have to look at now. When do you disclose? When don't you disclose? It's a very big issue.
Very good. Thank you.
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For Multiple Sclerosis Discovery, I'm Dan Keller.