Host — Dan Keller
Hello, and welcome to Episode Seventy-six of MultipleSclerosisDiscovery, the podcast of the MS Discovery Forum. I’mDanKeller.
Pregnancy presents special considerations for women withMS.Beyond the medical and pharmacological issues, there aresocial,socioeconomic, and parenting concerns. Dr. Dessa Sadovnick,aprofessor of medical genetics and neurology at the UniversityofBritish Columbia in Canada, spoke on issues ranging frompregnancyplanning through the postpartum period at the WorldCongress ofNeurology in Santiago, Chile, in November, where we metup.
Interviewer – Dan Keller
Let's talk about gender and hormonal issues in pregnancy.Whatare some of the things you're looking at now?
Interviewee – Dessa Sadovnick
Well, in terms of gender, it's really been interesting thefactthat initially it was actually thought that men may have MSmoreoften than females. And now, of course, it's very wellestablished,as with many other autoimmune diseases, that femalesare affectedmuch more than males. The question is why? And there'sa lot ofresearch being done into hormones, especially theestrogens, theestradiols, to try to see how that relates to diseaseonset,clinical course, etc. But again, there's no reallyfirmanswers.
We do know that the hormonal changes during pregnancy do seemtoreduce the number of relapses during gestation, and as soon asyoudeliver, the relapse rate goes up very high. So this is one areaofbig interest. There's been some recent work published onmenopause,and it does not seem that women who have MS havemenopause earlierthan other women or later than other women. Theredoesn'tnecessarily seem to be a direct effect between clinicalcourse andmenopause, other than to say that a lot of the symptomsdo overlap.So you have to be very careful, as a clinician, todecide whetheryou're talking about MS-related symptoms or symptomsthat might beamenable to treatment just for regular menopause.
Puberty is a very key period in MS. We know that you can getMSprior to puberty, but it is recognized now in thepediatricpopulation that the group who have it prior to puberty dohave amore similar female to male ratio. It's only once pubertyhits thatyou have the excess in the females.
Does pregnancy permanently change physiology compared tothepre-pregnant state, or do people go back to their baselinerelapserisk after some point?
There is no evidence to say that having a pregnancy willchangeyour long-term course or your outcome after a given period oftime.It seems like people on the whole, and everything is always onthewhole because there's always the exception, but in general,youtend to go back to what you were like before, taking intoaccountthat, after pregnancy, you'll have had a longer diseaseduration.Just an example, if it takes you a year to becomepregnant, thennine months pregnancy, three months postpartum, thenext time youlook at it you're two years since before you tried toget pregnant;so you're two years more into the disease. But there'sno evidencethat pregnancy harms the long-term outcome of MS, andthere's noevidence that not getting pregnant is beneficial forwomeneither.
Is there a physiologic explanation for the higher relapserateafter pregnancy? Is it easily identified, or is itprettyhypothetical?
Well, it's thought to be related to the changes in hormonesassoon as a woman delivers. But there's nothing that can mark ittosay this woman's going to get it, this woman's not going tohaveit. You know, there's no marker that's going to say who's goingtohave a relapse after delivery, who isn't.
Even though there's not much data right now about many ofthedrugs used in MS and pregnancy, women are advised oftentimes nottobe on the drugs, but they also don't immediately get pregnant.Sodo they have a long period potentially of risk of relapse, anddoesthat affect the long-term course eventually?
Well, there's been controversy in the literature aboutwhetherthe number of relapses a woman has while shehasrelapsing-remitting MS affects her emergence intosecondaryprogressive MS. So there's been controversy at thefindings aboutwhether the number of relapses predicts how soonyou're going to gointo a progressive phase or not. As far as I'maware, the mostrecent information suggests that they might be twoindependentfactors. So, it's a hard question to answer.
Obviously, the drugs don't cure MS. So it's not that you'regoingto prevent MS by taking the drugs or stop MS dead in itscourse bytaking the drugs. You're taking a risk. [With] anyrelapse, youdon't know whether there's going to be a completerecovery or apartial recovery. The more relapses you have, theharder everythingis in day-to-day life and coping and recovery,and getting pregnantis not something that happens instantaneously.So it's a bigdecision that women do have to make. And there's noreal easy answerfor saying who will do well being off themedication for awhile, whowon't do well being off for awhile.
It's an informed decision that people have to make. And wesayit's very important that if you're planning a pregnancy, toreallylook at all the information that's relevant to yourparticularsituation and make an informed decision about yoursituation.There's no general answer for everybody. And we've comeup withsome reproductive counseling models that deal with the wholeareaof reproduction and reproductive planning.
Now, one thing that I find that people often don't tend tothinkabout is that they think of getting pregnant in termsofconceiving, having a pregnancy, delivering, and the threemonthspostpartum. But they forget the fact that once you do have achild,there's a lot of commitment you have for a long timemovingforward. It's not just your three-month postpartum relapseratethat you're concerned about. And people have to be verycognizantthat if they do have a chronic disorder, that this willhave someimpact on their socioeconomic status, on their ability toparent,on relationships; all this has to be taken into account. Andtwo ofthe things that we often say to people who are planning apregnancyis: One, remember that it's a long-term commitment; andtwo, as aparent, instead of focusing so much on what youcan't dobecause you're a parent who has MS, maybe youshould focus more onwhat you can do. And I think that's avery good attitudeto have.
I remember many years ago we had a woman who was just soupset,because in the city she lived in there was a big annualfestivalfair every year. And she'd take her children there, and bythe endof the day she was hot, she was tired, she'd have a relapse,she'dbe in bed, but she felt it was her duty, as a parent, to takethechildren to this festival. So we just talked about it fromapractical point of view, nothing specifically medical oranythinglike that. And said, well, what would happen if you wentwith yourkids with someone else; you stayed in a nice shady place,you had,you know, something cold to drink. Your kids went off anddid allthe running around, and then they'd come back and report toyouwhat they're doing. And, you know, try a day like that insteadofyou're being the one to kill yourself running around with themtoall the activities. And she came back to the clinic a coupleofyears later, and she says, you know, it was such a difference.Thekids had a good time, and instead of my being in bed for thenexttwo weeks, we went out for dinner after, and lifecontinued.
So I think that that's so important when you're talkingaboutplanning pregnancies is you have to think forward. You knowthatfor anybody having a baby in the newborn period, it's tiring,it'sstressful, not only for just the mother, but also for thefatherwhether he has MS or not. So if you know this is going tohappen,before you get to the point where you're in such a stateofexhaustion and relapses start happening, maybe plan ahead.Noteverybody can afford nannies or housekeepers or things likethat;that's a fact of life. But there's nothing to say you can'ttalk tofriends and work out a system where you get a bit of extrahelp inadvance, not just wait till you hit the crisis mode.
And I suppose in the early postpartum period you could beverysleep-deprived.
You can be very sleep-deprived, and then you have tostartthinking. If you're a father whose wife has just had a baby,maybeyou should try to sleep in a different room, not worryaboutgetting up when the baby gets up during the night. If you'reamother who has MS, maybe you want to reconsiderbreastfeeding.Maybe you want to consider expressing, so that you'renot upconstantly with the baby. You have to be practical. And Ithinkthat that is the big factor is: in theory there's so manythingsyou're supposed to do, but you actually have to be practical.Thefatigue component with a newborn is not going to go awayregardlessof if you have MS or not. So if you know in advance youhave MS,and it's going to be more of an issue, why not try to makesomepractical plans?
You had mentioned the changing sex ratio mainly becausemorewomen are being diagnosed with MS. Is it that there is more MSorbetter diagnosis or some other reason for this increase inthegender ratio with women predominating?
Looking at it in terms of a gender ratio, you're basicallytakingout factors, such as improved diagnostic techniques. So whatwe'restarting to think is that females react differently toenvironmentaltriggers than do males, and this could be a reasonfor the increasein females. Women are living a very different lifetoday than theydid even 30 years ago in terms of occupation, beingout of thehouse, exposures. Women react differently to vitamin D.Women havedifferent smoking habits in reacting. So we're thinkingthat what'shappening is that the female is actually responding toenvironmentalfactors in a different way now or being exposed morethan she wasmaybe a few decades ago.
Do women live proportionately longer with MS? Could they justbegetting older, and the men aren't getting as old, and thatchangesthe ratio at that end of the spectrum?
Life expectancy does not really seem to be dramaticallyalteredin multiple sclerosis for males or for females. We've donestudieswith actuarians from life insurance companies looking atthis, andMS really doesn't kill you. So I don't think lifeexpectancy is afactor.
Anything interesting or important to add?
Well, I think that a big difference is that there used to bealong lag time from the onset of the MS symptoms until youwerediagnosed. So a lot of life decisions, whether it wasdating,partnering, reproduction, or in that period when you reallydidn'tknow that you had a diagnosis, so in many ways ignorance wasbliss.You didn't really have to make decisions.
Now, of course, with the new techniques, people aregettingdiagnosed so much earlier in the disease. And they're beingtoldthat you have MS, you'll do fine, you know, there are therapiesyoucan try. You're still a person who has a life to lead. You'renotan MS patient for your whole life. So but every decision theymakethey have to go out and decide disclosure and how to deal withthefact that they now have a diagnosis. It's not this periodofignorance is bliss. So let's just take, again, going back tothepediatric example: you're a teenage, you're in university,you'reon the dating scene. When do you tell someone you have MS, doyoutell them? Do you not tell them? You're someone who's in their20s:you have a diagnosis of MS, you're dating, you talk abouthaving apermanent relationship and going on to have childrentogether. Whendo you drop the bomb that you have MS? When do youtell it toemployers? When do you tell it to in-laws? You know, whendo yousay this? That period of being ignorant is really gone now.And so,how you react, how society reacts, is something that wereally haveto look at now. When do you disclose? When don't youdisclose? It'sa very big issue.
Very good. Thank you.
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For Multiple Sclerosis Discovery, I'm Dan Keller.