I'm Ruth Dobson. I'm a clinical senior lecturer and neurologist based at Queen
Mary and Barts and the London.
Does MS affect my chance of conceiving?
As far as we know, MS doesn't affect your chance of conceiving. It's actually
quite hard to know this for sure and the reason is that we don't really know how
many people in the UK at any one time are trying to conceive and we don't know
how many people with MS are trying to conceive. So the information is really
not out there but, based on what we have got, there doesn't seem to be a
significantly lower conception rate in MS or importantly a significantly higher
miscarriage rate in MS either.
If someone with MS did have children, are they more at risk of getting MS?
The risk of someone getting MS is higher if
they've got relatives with MS than if they don't.
So yeah, the risk in children of people with MS is higher than in
somebody with no relatives with MS. However those children are much more
likely not to get MS during their lifetime than they are to ever get MS.
That's really important. Their risk at most is around 2% so around two in every
100 or one in every 50 children of someone with MS may go on to get MS
in their lifetime. I think what's really important to know is we don't understand
why this is. We think it's probably partly due to their genes, but not
completely due to their genes, but also that environmental factors might play a
role in increasing this risk. We don't understand a lot of these very well and
we're trying to do work at the moment to understand better what influences that risk.
Are any of the disease modifying drugs safe to take whilst trying to
conceive and during pregnancy?
The first thing to say is that this is
always done at an individual level and if you're thinking about getting
pregnant and having children you should really speak to your neurologist or your MS
nurse about this. The information that we have shows that interferon beta
preparations (so Avonex, Rebif, Plegridy) are safe to take both whilst
trying to conceive and during pregnancy. Also Copaxone, again in discussion
with your neurologist, is probably safe during pregnancy. These large
molecules are likely to be safe during breastfeeding as well. For women with
more active MS, the medication that's most likely to be safe or potentially
used during pregnancy is Tysabri or natalizumab.
There's increasing evidence around this, but really this is done on what we call
a risk-benefit ratio. So weighing up the risk of discontinuing
any medication to the person with MS, the risk of relapses or the disease coming
back, versus any potential risk to the baby of continuing this medication.
Those things have to be very carefully weighed up and at an individual level
which is why you've got to talk to your neurologist about this. We know that some
drugs are really not safe to be taken whilst trying to conceive and during
pregnancy. We know that fingolimod is not safe
during pregnancy and women should stop this at least a couple of months prior
to trying to conceive. So it depends on what medication you're on. It depends on
how active your MS is, so this is really something that is taken on a
case-by-case basis.
With any of the drugs, do you have to have a washout period
before you start trying for a baby? How do you know when to stop taking it?
Again this is something to discuss with your neurologist. There's lots of
information out there. Some of it's quite complicated and depends on the drug and
your MS. With some of the drugs there are very definite washout periods that you
should adhere to prior to trying to conceive. The most important of these is
fingolimod where you should stop taking the drug at least a couple of months
prior to trying to conceive. Other drugs where you need to think about
washout periods are Aubagio (or teriflunomide) and that's because that
can sometimes have quite a long washout period depending
on how you eliminate the drug or how you get rid of the drug from your
system. So that's something to discuss nice and early with your neurologist.
With the infusions there are variable lengths of time and it depends
on your individual circumstances.
Is it safe for a man with MS to be on a DMD if he's trying for a baby with his partner?
There's almost no information about this out
there and I think this is a real area that's important to people with MS that
the research community and the pharma community haven't really
addressed. We know that small amounts of Aubagio (or teriflunomide) are
detected in the seminal fluids, the fluid around the sperm of men with MS.
There have previously been concerns that this may be associated with a theoretical risk,
although there's no real evidence to back that up so I think the jury's still
out on that one. The one where we think it is quite important is cladribine or
Mavenclad, so with Mavenclad both men and women should use adequate
contraception whilst taking the drug and for some time afterwards. Men should
make sure that they are adhering to this as well as women because actually we
know that it does interfere with sperm production.
I've heard that women with MS go into remission while pregnant and relapse after birth.
Is that true? If so, why?
The first part of the question is, do women with MS go into remission during pregnancy?
The answer is yes and we've seen this since the earlier studies which were
published in the 1990s and we still see this in more modern studies that have
been published within the last year. On average women with MS have very few
relapses during pregnancy and the chance of you having a relapse gets less and less
the further through pregnancy that you get. The reasons for this aren't
particularly well understood although what we do see is we see a similar
pattern in other diseases of the immune system where the immune system is
fighting against the body. We think that this happens because when you're
pregnant your immune system in general is slightly lowered as a way of
trying to protect the baby from the mother's immune system and probably this
is what's having the effect on the MS as well. So thinking about after the baby's
born and the risk of relapse after the baby's born. The
earlier studies in the 1990s show that there was a significantly increased risk
of relapse in the three months after the baby's born, so the first three months
postpartum. And again you see this in more modern studies. So this is an
effect where relapses go right down during pregnancy and then flare back up
to above where they were pre-pregnancy after the baby's born. Again this is
thought to be due to the immune system sort of reactivating in the
period postpartum.
What if I have a relapse when I'm pregnant? Will it harm my baby?
The most important thing to take from this question is that relapses do not
harm your baby. Okay so whilst relapses are horrible
things to have and they can cause problems for the mum, they actually
don't harm the baby. There are treatments available for relapses, so we know that
we can use steroids during pregnancy and in fact steroids are used during
pregnancy by obstetricians in late pregnancy sometimes where the baby's at
risk of being born early. We prefer to use the steroids later in pregnancy
rather than earlier in pregnancy. This is the same with many
medications because during the first three months of pregnancy lots of
important parts of the baby are being formed. That's not to say we definitely
can't give them but we prefer not to if we don't really need them. We also
know that steroids when used for the treatment of relapses generally in MS
cause things to get better quicker but they don't change how things are in the
long term, so using steroids to treat relapses in pregnancy is something that
the mum and the neurologist have to talk about honestly, and the risks and the
benefits of both. I think that depends on the severity the relapse, how
much it's affecting the mum, all of those kind of things and really weighing up
those risks and benefits at a really individual level.
What's the recommended dose of vitamin D for women with MS who are pregnant?
There's no agreed guidelines for dose
of vitamin D specific to MS when you're pregnant.
The Royal College of Obstetricians and Gynaecologists has got UK-wide
recommendations for vitamin D in pregnancy. They recommend that all
pregnant women should take at least 400 units of vitamin D a day and those that
are at high risk of deficiency should take 800 units of vitamin D a day.
My personal view is that women with MS should at least be taking 800 units a
day. The other important thing about vitamin D and pregnancy is when they've
done trials looking at obstetric outcomes so looking at things
like preeclampsia, cesarean section, those kind of things, there's no evidence of
harm to the mum or to the baby from much higher doses of vitamin D to be taken
during pregnancy. We know that vitamin D might be important for the developing
immune system of the baby and I think this is something that's particularly
important in women with MS. What I would recommend patients to do, as long
as they don't have any reason not to be taking high doses of vitamin D, then to
be taking at least 800 units a day during pregnancy and think about taking
higher doses up to around 4,000 units because we know they're safe, we know
they don't do harm to the mum or the baby and they might do some good in the
long term.
Can a woman with MS breastfeed?
Absolutely, a woman with MS can breastfeed.
There's nothing about MS, sort of about the MS disease,
that is a reason not to breastfeed. I think for some women with very highly
active MS there has to be an honest discussion with their neurologist around
the pros and cons of breastfeeding versus restarting disease
modifying therapy. There is some evidence that breastfeeding may be very mildly
protective against relapses in women with MS but it's not as good as very
highly active disease modifying therapy. This has to all be weighed up. We know
that some of the medications are safe for use in breastfeeding, so particularly
Copaxone, interferon beta preparations, and more recently there's actually
evidence that immune molecules like rituximab and potentially ocrelizumab
actually don't get excreted into the breast milk in large doses so these may
well be safe for use in breastfeeding as well. There is a discussion
to be had there and I think there's a lot of information that's coming out
at the moment around this, so this is a field that's changing really very
rapidly. It has to be talked about and it has to be talked about during
pregnancy so that people know what their plan is.
What advice would you give to someone who's recently been diagnosed with MS
but wants to start a family soon?
I think I would take this on a
individual basis. I'd take it person by person. I don't think there's any
one-size-fits-all advice. It depends on how active your MS is, how many relapses
you've had, how much disability you have and also how advanced your family
plans are. Are you sort of currently trying for a baby when you've been
diagnosed? Is it something that you might want to do in the next six months? Is it
something that's on the horizon in the next couple of years? Because really all
of those things will affect what you do. I think there is always a weighing
up process between, well do I delay disease modifying therapy
and continue to try for a family? I think for some women that
might be the right decision especially those with less active MS, with
relatively mild disease who are currently trying for a family anyway.
I think in people with more active disease who maybe were thinking about
starting to try for a baby in the next six months or so, it may be a better
decision to start treatment and maybe aim for a period of MS
stability for a few months before starting to try, so delaying things by a
few months. I really do think it's it's very individual. It depends where
you are in your life and I think the discussion has to be around your
personal situation and what's the best thing for you to do.
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