What to know about MS and pregnancy
Got questions about fertility, pregnancy, childbirth and MS? Consultant Neurologist, researcher and MS pregnancy expert Professor Ruth Dobson dives into your queries.
Ruth has made it her mission to fill the information gap around pregnancy and multiple sclerosis, inspired by her work in MS clinics. “All these people come through clinics asking ‘what do I do around pregnancy’? And there weren't any guidelines for how people should be treated. It just seemed wrong.”
Thanks to the work of Ruth and her colleagues, there are now medical guidelines for pregnancy and MS. She also played a key role in setting up the MS Pregnancy Register, to help understand the experiences of pregnant women with MS in the UK. Ruth explains, “We wanted to work out what we can do to better support people.”
First things first: fertility and MS
Can MS cause problems with fertility?
Ruth’s answer is very clear: MS doesn’t directly affect fertility.
Ruth’s answer is very clear: MS doesn’t directly affect fertility.
However, some people trying to conceive could experience difficulties related to MS symptoms or the side effects of medications. For example, MS can cause problems with sex drive, sensitivity, erections and ejaculation. And about medications, Ruth explains “If you’re taking medications that either reduce sex drive, or are associated with erectile dysfunction, this may have an impact on the chances of conceiving. This can particularly be the case with some of the treatments for symptoms, which can affect sexual function.”
If any of these issues sound familiar, chat with your neurologist, nurse or GP. You could review your treatments or access specialist support.
It’s also important to remember that, unrelated to MS, many people can have trouble conceiving. If you’re finding it difficult to get pregnant, or if you’ve experienced miscarriages, you’re not alone. There can be lots of different reasons for this, so chat to your healthcare team about your options.
You may also be reassured to hear that research so far shows having MS doesn’t increase the risk of miscarriage, premature birth, still-birth, birth abnormalities, or ectopic pregnancy (where a foetus develops in a fallopian tube).
Eggs, sperm and treatments
JJ, who was diagnosed with MS when she was 17, is concerned MS treatments could affect the health of her eggs. And she also wonders if people with MS can freeze their eggs.
JJ, who was diagnosed with MS when she was 17, is concerned MS treatments could affect the health of her eggs. And she also wonders if people with MS can freeze their eggs.
Happily, there’s no evidence that disease modifying therapies (DMTs) - other than stem cell transplantation - affect the health of eggs when they’re in the ovaries, according to Ruth. Some drug treatments might affect a developing foetus, but we talk about this a little later on. If people are looking to freeze their eggs for another reason, MS shouldn’t be a barrier.
On whether sperm is affected by DMTs, Ruth adds “There are some treatments that men should not take at the same time as trying for a baby. I’m particularly thinking of Mavenclad (cladribine) where men need to use contraception for six months after treatment.” Except for HSCT treatment, effects on sperm are temporary.
This was important knowledge for Chris - who has MS - and his wife. They were hoping to get pregnant again when he was deciding what DMT to take. At first he was drawn to Mavenclad because it’s a tablet-based treatment, but they didn’t want to delay trying. So he instead chose an alternative - though it wasn’t his first choice.
“There was a lot for us to learn and we did a lot of research,” he says. “Although the medication I chose seemed more inconvenient (it’s one of the injected ones), for me it was a small price to pay for family planning.”
If you’re thinking about HSCT – a stem cell treatment for MS – it’s important to know this can affect fertility. This is the case for both women and men. Anyone considering HSCT treatment should discuss whether they want to freeze their eggs or sperm before the treatment.
Could I pass MS on to my child?
A question that often comes up is: can you pass MS on to your child?
No one knows for sure why people get MS. But researchers think the risk of developing MS is influenced by a mix of different things. These include your genes, something in your environment and some lifestyle factors.
“We know there’s a genetic contribution,” Ruth explains. “But it's not as simple as one or two genes that dictate if someone gets MS or not. There are hundreds and hundreds of genes that contribute to the risk of developing MS. If you have a parent with MS, then your chance of getting MS is higher than if you don't. But it remains much more likely that the children of people with MS won't get MS than they will.”
Read more about the causes of MS
Disease modifying therapies and pregnancy
If you’re taking a disease modifying therapy (DMT) – or deciding which one to take – think about how different treatments might impact your family planning.
As mentioned before, most DMTs don’t pose a problem for the health of the sperm. For example, Ruth says “The effects of Mavenclad on sperm only last for up to six months after you stop taking it.” And she adds “If you’re considering HSCT, discuss your family plans with your health care team, regardless of your gender. If you want to go ahead with HSCT and are considering having children in the future, they can refer you to a fertility service.”
But for anyone thinking of getting pregnant, there’s more to consider. “Even if you’re not thinking about children now, but might be in the next couple of years, I’d encourage you to have that conversation with your neurologist,” Ruth advises. “It can feel like a challenging conversation because it's quite a personal thing. But it can take the stress away a bit later.”
Even if you’re not thinking about children now, but might be in the next couple of years, I’d encourage you to have that conversation with your neurologist.
She explains “There are some DMTs that are safe to take when you are trying to conceive. There are DMTs that are safe to take during pregnancy as well. But that's not true of all of them. There are some DMTs that are absolutely a hard no during pregnancy, and each DMT has specific considerations around pregnancy.
“So if you're thinking about trying to conceive, even if not in the near future, it's worth having that conversation early on. If you're on a DMT that's not suitable to take when you’re trying to conceive or during pregnancy, then you need to make plans. That could be to switch or pause treatment before you start to try to conceive, or when you get pregnant. These plans will depend in part on the DMT you’re taking.”
It’s a really individual discussion, Ruth says. “For some people, it’s the right thing to do to continue taking medication, whereas for others it might be the right thing to do to pause. This decision depends on a lot of factors. These include which DMT you're taking, what your MS is like, and what your monitoring MRI scans have been like. It also depends on what risk is associated with stopping the DMT you’re taking. Because that's not the same for all people with MS and is different across DMTs."
And remember, you should always speak to your neurologist if you’re thinking of stopping your DMT.
Check out our DMT decision making tool
What’s the impact of delaying starting a DMT until after pregnancy?
“It depends on somebody's MS,” Ruth says. “Things that are important include what their MS is like, how active their MS is, what DMTs are being offered. For some people it's the right decision, but for others it's completely the wrong decision.”
“The potential impact of delaying a DMT is relapses and disability from MS. But, for example, if your MS isn’t that active, or if you’ve only ever had one very mild attack, your risk might be lower.” This would be something to discuss with your neurology team with your specific circumstances in mind.
“If somebody’s got very aggressive active MS then the advice would be different and that’s one to discuss with the neurologist. It’s not the same for everyone. And, as many of the people reading this will know, it’s not as simple as deciding you want to have a baby and then you immediately get pregnant. Life doesn’t work like that. It might happen quickly, but it might not. It’s worth thinking about that too.”
Accidental pregnancy and DMTs
As Ruth says, life doesn’t always go to plan. What happens if you fall pregnant accidentally while taking a DMT? You may not be sure if it’s suitable when you’re pregnant. “Talk to your MS team about your particular situation as soon as you can,” Ruth advises. “The advice may not be to just stop taking your treatment. Every DMT and every person with MS is unique, and so you need to get advice around your specific situation.”
Relapses and pregnancy
You might be anxious about the risk of an MS relapse after giving birth. That was mum-of-two Catherine’s worry when she had her first daughter 12 years ago. At the time there weren't any DMTs she could take during her pregnancies. “Relapsing was one of my main concerns. Because you're told that MS lies a bit dormant when you're pregnant. And then once you have the baby, it'll flare up again. So you do worry. I had a relapse after I had my first baby, and it was tough.”
Ruth says the picture has changed over the years. “The earliest pregnancy data from the late 90s showed people with MS were more likely to have relapses after giving birth. But this was in people who weren't on any disease modifying therapies, with relatively active MS. On average the risk of relapses before, during and in the months after pregnancy is much less than it was 20 years ago. This is probably because we have access to treatments and we're getting better at understanding who's at highest risk. This means we’re better at advising who probably should stay on treatment and who's OK potentially to pause or stop treatments.”
On average the risk of relapses before, during and in the months after pregnancy is much less than it was 20 years ago.
Read about relapse risk on our pregnancy information page.
Will pregnancy make my MS worse in the long term?
Parents-to-be may also have concerns that being pregnant could make their MS worse in the long term. Is this the case?
Ruth says “There can be an impact where people have very active disease and stop their DMT for pregnancy reasons, and then have a bad relapse they don’t completely recover from."
“But otherwise overall in the long term there doesn’t seem to be any effect of pregnancy on MS."
Breastfeeding and MS
After Seema had her daughter, she wanted to know how long she could breastfeed for, and if breastfeeding could help her MS. If she couldn’t, was she at a higher risk of relapse?
Whether you breastfeed can influence your choices about going back onto a DMT after giving birth. “Some treatments are suitable and can potentially be given when you're breastfeeding, others not so much,” Ruth explains.
Some evidence suggests there’s a protective effect on relapsing from breastfeeding. That could be because breastfeeding keeps hormone levels similar to what they were in pregnancy. But Ruth points out there’s probably only a slight impact. “In those studies, we can’t be sure exactly how much difference breastfeeding made. People often had to choose between taking a DMT and breastfeeding. So it’s possible the people who chose to breastfeed were less likely to have a relapse in any case.” We need more research to fully understand this.
Catherine was keen to get back onto her DMT after giving birth to her second child. Her DMT was one she couldn’t take while breastfeeding, and she struggled with feelings of guilt. “There’s so much pressure to breastfeed and I felt it was my fault that my daughter wasn’t getting breast milk. But you’ve got to do what suits your family life.”
If you’re thinking about breastfeeding, Ruth’s advice is to think about this during pregnancy. Have the discussions with your team early, and have a plan B in case things don’t go as you hope.
If you’re thinking about breastfeeding, Ruth’s advice is to think about this during pregnancy. Have the discussions with your team early, and have a plan B in case things don’t go as you hope.
“Questions to discuss with your family and your MS team could include: ‘Is breastfeeding something that I would like to do? If it is, do I want to start treatment when breastfeeding?’ Be aware that breastfeeding doesn't always go to plan and it’s not always easy. Discuss with your MS team how this impacts what treatment choices you might make.”
There are other things to bear in mind too. “When you're breastfeeding, positioning and things like that can be really crucial. Might your MS symptoms make that more difficult? Your MS team and local breastfeeding support services might have suggestions of how to manage this.”
Progressive MS and pregnancy
Often the focus of information about pregnancy and MS is on relapses and how to approach treatment decisions to prevent these. But lots of people with progressive MS don't have relapses. So what do we know about pregnancy and progressive MS?
“When we look at pregnancy registers, most of the people on them have relapsing MS because, overall, they include a young population. And the number of younger people with progressive MS is small,” Ruth says. “The work we’ve done, based on small numbers, shows that pregnancy doesn’t seem to have a big impact on long-term outcomes in people with progressive MS. This is similar to what we find with relapsing MS.”
During pregnancy, “some people with MS can feel great, some people not so great. This is true for people with progressive MS and relapsing MS. This can manifest through their MS symptoms, but doesn’t usually cause long-term changes.”
During pregnancy some people with MS can feel great, some people not so great. This is true for people with progressive MS and relapsing MS. This can manifest through their MS symptoms, but doesn’t usually cause long-term changes.
Jo lives with primary progressive MS. She was told she probably had MS before having her second child. “Having a second child felt like a massive decision as no one could tell me much about my MS,” she says. “I felt quite alone. I think because I felt quite scared, I prepared more. Something that helped was going to birthing classes, where I learnt techniques to relax. I had a brilliant midwife too. And I actually found the birth easier than my first. I’m very happy with my decision to have a second child.”
Symptom management medications and pregnancy
Whether you take a DMT or not, you might take medication to manage your symptoms. There will be specific advice around pregnancy for each medication. “In general the rule is during pregnancy: the minimum number of medications at the lowest possible dose,” Ruth says. “So there may be a process of trying to see if any can be reduced. People might stop some, but go up on others to make up for it – it’s really individual.
“And people will have different experiences of pregnancy, as with anybody. It’s about keeping communication open with your healthcare team and finding where the balance lies with you.”
Having IVF when you have MS
MS isn’t a barrier to having fertility treatment. Mum Seema went through several rounds of IVF a few years after her diagnosis. “The advice had changed for the DMT I was on. So when I started IVF, I could stay on it until I fell pregnant. One of my biggest fears was coming off meds, so that really helped.”
As Ruth explained earlier, you might need to stop taking certain treatments while you’re trying for a baby (including through IVF) or if you’re pregnant. But it depends on the treatment.
If you’re concerned about IVF and the risk of relapse, recent research is reassuring. “There's been a couple of big research projects published in the last year looking at this,” Ruth says. “People don’t seem to be more likely to have MS relapses during IVF. Particularly where they are taking disease modifying therapy up until the embryo is implanted in the womb. So staying on an MS DMT during all of the IVF procedures and hormonal manipulation is now more common. Information about the longer term impact of IVF on MS is missing, although we don’t think that having IVF causes any long term changes in MS.”
People don’t seem to be more likely to have MS relapses during IVF. Particularly where they are taking disease modifying therapy up until the embryo is implanted in the womb.
Giving birth and MS
With all this to think about, it’s easy to overlook questions about giving birth. Before going into labour, Catherine found herself worrying if an epidural was suitable for her – she’d heard it could impact your legs. Could that affect her MS?
Ruth knows this can be a concern for some people. “Epidurals make your lower body numb – and that can be quite triggering or anxiety-provoking,” she says. “People can worry it will bring on a relapse but that is not the case.” MS shouldn't stop you taking pain medications during labour.
Should MS be a factor when you’re thinking about how and where to give birth – does it make you high risk?
“Again, this is really individual. Think about your symptoms and how your MS affects you. For some people with milder MS and no other risk factors there’s no reason not to have the full range of birth choices. This includes vaginal birth, caesarean section or home birth where this is available. If you are more disabled, or have problems with fatigue or spasticity, some birth options might not be appropriate. It’s about how MS manifests in you. It helps to be a planner and think through these things and what your plan B and C might be.
“Quite often you don't always have the control over your birth experience that you might want. And that's not necessarily to do with MS. That can be birth plans in general.”
Beyond birth – looking after a new baby
If you’re thinking about having a baby, questions around conception, pregnancy and birth are of course just the beginning. Look out for our deep dive into caring for a new baby, coming soon.
But the key thing to know is that support is out there, especially around looking after your mental health. Talk to your health visitor, midwife or GP if you need extra support. “They’re a really good place to start,” says Ruth.
Whatever stage of family planning you’re at, don’t be afraid to ask for help.
Whatever stage of family planning you’re at, don’t be afraid to ask for help.
As one of our questioners, Chris, says “If you’re having troubles, or you’ve got questions, support is there – take the help when you need it. For me that mainly came from my MS nurse and the MS Society’s information.”
We’re here for you
Read our information pages on pregnancy, birth, breastfeeding and MS.
You can also explore our DMT decision making tool
For information and emotional support about any aspect of MS, you can contact our MS Helpline for free at 0808 800 8000 or email [email protected]
Read more about sources of emotional support
Pregnancy guidelines and MS
Read the 2019 detailed ABN guideline for health professionals on pregnancy and MS
What’s next for Ruth?
Ruth and her team are continuing to increase our knowledge about pregnancy and MS in the UK. If you have MS and you’re pregnant, you can join in and sign up to the UK MS Pregnancy Register.
And next year she’ll be starting a new MS Society-funded research project to explore why people with MS who are pregnant often experience fewer relapses. Read more about this project.
