Multiple Sclerosis Conversation - 17th March 2021

Hello and welcome to this BUMPS conversation, in collaboration with the Innovative Medicines Initiative (IMI) ConcePTION project.

As March is Multiple Sclerosis awareness month and we are gearing up for MS awareness week 2021 (19-25th April), we are bringing you a conversation exploring the knowledge gap that exists for medication in pregnancy and breastfeeding between me, Alison Oliver, a scientist at the UK Teratology Information Service (www.uktis.org ), and Katrin who received a diagnosis of Multiple Sclerosis (MS) a number of years ago. Katrin speaks about some of the decisions she had to make regarding her medicines when planning her pregnancy.

Hi Katrin, thanks so much for joining me today.  Can you tell me a little bit about yourself and your diagnosis?

I came to study in Britain from Sweden when I was in my early 20s and in 2005, just as I was starting my first year of university, I was diagnosed with relapsing-remitting MS.  It was the normal onset with eye and mobility problems and I was referred to the Royal Victoria Infirmary in Newcastle upon Tyne straight away.

Fast forward a few years, can you tell me about when you started to consider having children?

I met my now husband in 2008, got married in 2011 and started to think about children not long after.  My husband was always keen to learn how he could support my needs in terms of MS and we went to an MS conference at the Sage, Gateshead.  I directed a question to one of the Professors to ask if it would be safe on my medication to have children and what I needed to consider…. and he quite bluntly said, ‘you just shouldn’t get pregnant’.

That must have been difficult to hear.  But fortunately that didn’t completely dissuade you from starting a family did it?

No, it didn’t and when we became serious about starting a family, I felt like I wanted to do as much research as possible.  I talked to my MS nurses and doctors at the hospital and they were all very supportive, I found the younger and I guess more newly trained healthcare staff were perhaps easier to get help from.

Did you feel like you were well supported?

Yes, I felt like I had a lot of people to help me and my neurologist was especially helpful and supportive. I got information and statistics about the potential risks and benefits to me staying on my medications-  I was taking a disease modifying drug called Tysabri which was very new at that time and an antidepressant.   I was happy that there was the acknowledgement that if starting a family is important to you, then you shouldn’t just disregard it because you have a condition or are on medication.  However, when it came to the disease modifying drug there was never any question that I should stay on it, and that wasn’t really based on a lot of evidence that there was a bigger risk, it was just that Tysabri was new then and there wasn’t really much information about it.  My neurologist also told me that in some cases, people with MS can have an improvement in symptoms in pregnancy.  So along with my MS doctor, we came up with a plan to allow a break from the drug during pregnancy.  For me, that turned out to be the right decision as fortunately I felt better during pregnancy and didn’t need my medication-  I appreciate this might not be the case for everyone.

Yes, so it sounds like the decision to discontinue your medication was really primarily driven by the fact that there were no safety data available.  There is now more known about Tysabri (natalizumab) in pregnancy and today there would perhaps be more of a risk/benefit discussion for anyone taking it in pregnancy?

Yes, at times it felt like ‘me’ as a pregnant person and ‘me’ as an MS patient felt like two different personalities, and sometimes it felt difficult to find the path in the middle where both can be helped.  For the antidepressant, I decided to continue this during my pregnancy as the benefits to my mental health were clear and there was more information available on the safety of that drug during pregnancy.

Can you tell me about after your baby was born and the support you received then regarding treatment?

Yes, so I had a healthy baby girl and I made the decision to breastfeed her for 4 months before restarting my medication and feeding her with formula.  This was really based on the information that my neurologist gave me on risk of relapse following birth.

Do you think there was enough information regarding the safety of your medications in breastfeeding?

No, there definitely wasn’t enough information regarding my disease modifying drug.  To the point that I wouldn’t have wanted to risk breastfeeding when on the drug.  There appeared to be a bit more information available for the antidepressant.

The biggest issue again was that there was not enough data available to inform your decision?

Yes, but I appreciate that those I spoke to within the healthcare system were carefully considering the importance of having the choice to breastfeed where possible.  I think it’s really important to speak to someone who looks at managing the condition, pregnancy and breastfeeding in a holistic way.

Is there anything you felt you would have liked to have been available to you when you were planning your family and breastfeeding which would have helped in your decision making?  Is there anything that particularly helped?

I think it would have been nice to have had a well signposted professional website to access information about medicines pregnancy.  I found the basics on the MS Society website, which was really useful and I also used MS forums, but I didn’t find a professional place to go to find information.  I wasn’t really aware of UKTIS.

Some recent work we have been involved with in the ConcePTION project has definitely highlighted that there is quite low awareness of teratology services as places to go for medicines in pregnancy information.  Since you were pregnant, UKTIS launched a website called BUMPS aimed at the general public with easily digestible information summaries based on our full systematic reviews of scientific literature.

I think that would have definitely been great for me when I was pregnant. I did a lot of research but to have everything summarised in one place, that’s endorsed by the NHS… that would have helped a lot.

With regard to addressing the need for data, UKTIS BUMPS has a secure registry for all women, to record their details about their own pregnancy, to help to improve the knowledge about the safety of medicines in pregnancy for women in the future.  Would you have been happy to make a record and share information about yourself and the medicines you took? 

Yes, definitely.  Why not?!

What would you say to women who might be hesitant to provide information?

I would say that anything we can do now, to help women in our situation in the future has got to be a good thing.

Is there anything more you would like to highlight with regard to MS, pregnancy and breastfeeding?

Yes, I would say it’s important to have a good healthcare team around you when you are pregnant and to know who to approach about different aspects of your pregnancy-access to physiotherapy was especially important to me as I got heavier with the pregnancy.

Many thanks to Katrin for sharing her experience of decision making regarding medicine use in pregnancy and breastfeeding.

Information on the use of medicines in human pregnancy is lacking, especially for new or infrequently used products. The BUMPS online reporting facility offers all pregnant women (not just those taking certain medicines or whose pregnancies did not result in a healthy baby), or women who have been pregnant in the past, the option to create their own password protected ‘my bump’s record’. The information entered into these records is stored by UKTIS and reviewed periodically to help better understand how the medicines, a woman’s lifestyle or the illness for which she was taking the medicine, may affect her baby’s development in the womb.

If you require information about medicines you are taking during pregnancy you can access information leaflets from our website - https://www.medicinesinpregnancy.org/Medicine--pregnancy/. It is important to speak to the healthcare provider that prescribed the medicine (or your GP) and let them know you are pregnant. They will be able to advise as to whether to stop or continue a medicine during pregnancy. Your doctor will help you to decide whether or not taking a medicine is the best option for your and your baby’s health.

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