“It is vital we do more research on pregnancy with rheumatic diseases”
Many women with rheumatic disease have questions about pregnancy. One question is whether it is best to continue with medication, or take a break? Because every experience of rheumatic conditions is different, the answer will not be the same for everyone. The specialist doctor Katarina Remaeus researches pregnancy with arthritis and believes more knowledge is needed to ensure the best possible conditions for a good pregnancy.
Who are you?
My name is Katarina Remaeus and I am a specialist in gynecology and obstetrics. I work at BB Stockholm, Danderyds hospital in Stockholm. I am also involved in research and will be defending my dissertation this February on pregnant women who have juvenile idiopathic arthritis (JIA) or psoriatic arthritis (PsA).
Why is it important to research this topic?
It is very important to do more research on pregnancy and rheumatic disease. We want to learn more so we can best ensure this group gets the care they need during pregnancy. This is true at a group level, but a rheumatic diagnosis is more of a spectrum, which means the factors that can affect pregnancy are individual. So we want to know more about the things we need to look at, what we can prepare women for and how we can prepare to provide the best conditions.
Many women also become frustrated that the healthcare system can do relatively little about rheumatic disease and pregnancy. They want answers: Should I stop taking my medication during pregnancy? What could happen to my underlying disease if I do? Can I give birth vaginally? Can I breastfeed if I start taking my medicines again? Of course, it is up to each woman to make risk assessments in consultation with us and it would be easier if we knew more than we do right now. The results of our research today may not help an individual woman right now, but we need to start somewhere.
Every year, the national guidelines for medication during pregnancy in rheumatic disease are reviewed. But because everyone's condition is different, the same solutions when it comes to drugs and pregnancy do not apply to everyone. General guidelines can lead to different individual solutions for different people. The balance between risk and benefit has to be made at an individual level. Unfortunately, this can be a bit confusing, as we end up with decisions that one person should be medicated, but not another.
Many people want to know how pregnancy will be for them, which is a perfectly reasonable question. Unfortunately, we can not answer that question until after that individual has completed their pregnancy. For most people, pregnancy is completely normal with a normal birth. The issue is we do not know in advance who, for example, may need extra efforts via specialist maternity care.
Much of what happens during pregnancy is about trusting your body and letting it do its thing. When you have a chronic disease where your immune system can attack your body, it can be difficult to follow advice to "trust your body", and saying it to someone who has this sort of illness can be counterproductive. That means we also have a psychological task, to persuade someone to dare to trust the body that has let them down. That I, as a woman, can give birth to a healthy child, vaginally, spontaneously, the same way many other women do, despite my illness, can almost be a little healing. The fact you might have a chronic disease does not mean that things have to be in a certain way. It’s important to talk about it so we can plan the pregnancy and delivery in the way you want, as far as possible.
We tend to lump people together just because they have a particular diagnosis. But just like people without that diagnosis, everyone is different. Some are scared while others aren’t, for example. I think we as healthcare professionals in general have been quite bad at handling people as individuals, but we are now actively working to try to change this and personalize the care we offer.
Tell us about the study on pregnancy with JIA
Reports of pregnancy outcomes in women with JIA have been few and far between. The purpose of this study was to investigate pregnancy outcomes in a large and contemporary group of women diagnosed with juvenile idiopathic arthritis (JIA). The study examined women who had children in Sweden between 1992 and 2011.
What we could see from the study was that for those who were diagnosed as children and then had a relatively symptom-free illness or were in remission after the age of 18, the diagnosis does not seem to have a significant impact during pregnancy. Among those who had a more active disease or had increased disease activity as adults, however, there were similarities with what pregnancy for people with RA looks like. The effects could have been that they gave birth a little earlier, suffered from preeclampsia or that they were more likely to have a cesarean section. The study therefore concluded that pregnancies in women with JIA should be monitored during pregnancy and childbirth.
Read the article here: Juvenile onset arthritis and pregnancy outcome: a population-based cohort study
Tell us about the study on pregnancy with PsA
Studies of pregnancy outcomes in psoriatic arthritis, PsA, are also few in number and usually small in scope. Existing studies have also reported conflicting results. This study describes pregnancy outcomes for mothers and infants among women with PsA compared with women without PsA.
We were able to compare pregnancies in people with and without PsA by using national health and population registers. We found that women with PsA had an increased risk of giving birth prematurely and an increased incidence of cesarean section compared to non-PsA pregnancies. We saw no increased risk of preeclampsia, gestational diabetes, or adverse effects on the newborns (other than premature birth).
What else needs to be researched?
Adapted assessment scales for disease activity and functional impact during pregnancy. Since a pregnancy involves a major adjustment both physically and mentally for most people, it is important to be able to assess whether things like increased fatigue and pain are due to the pregnancy itself or are a result of increased activity in the underlying disease. For this, we would need instruments and rating scales that take into account pregnancy.
Detailed knowledge of medication. We would need more detailed knowledge about the medication before, during and, after pregnancy and the effects of drugs both in the short and long term. We need to collect daily data on drug intake.
What support is necessary? We want to know the research studies being carried out are useful. What questions are important to answer? The best way forward is to acquire as much knowledge as possible, but we also need insight into what women with a diagnosis need to know in order to feel safe during their pregnancy.
The difference between the first and subsequent pregnancies. We have been able to see in studies that there is a difference between first and second pregnancies for women with a rheumatic diagnosis, which is very exciting. We want to study this further to find out what the important factors are.
What is the most important thing for you to convey?
The most important thing is the collaboration between the person giving birth, their obstetric care and their rheumatologist. There is a good chance for a completely normal pregnancy and birth. We may need to monitor and control things in order to end up in that ideal position, and some people will suffer complications that we know are associated with inflammatory joint disease.
It is vital you are brave enough to ask about the things you are afraid of, so you do not end up postponing childbirth for something that may not be such a big risk. For example, if we say there is a risk of giving birth prematurely if you have a certain disease, it will happen to some people but not to everyone. That is why it is important to have an open dialogue between everyone concerned.