Monika Ostensen is consultant for the Center for Pregnancy and Rheumatic Diseases at the University Hospital of Trondheim, Norway and consultant for the High Risk Pregnancy Unit, Department of Rheumatology at the Sörlandet Hospital in Kristiansand (Norway). She presented at the European Lupus Meeting and agreed to share thoughts with Bernadette:
Q : According to you, what is the most important news for lupus patients?
A : The most important is that doctors have developed standard care for treating lupus. New drugs are in the pipeline and strategies for more effective treatment have been developed.
Q : What is the most important thing to say to young ladies who want to be pregnant?
A : They must be well aware that pregnancy should be planned in advance. Lupus should be in remission or in stable low activity before getting pregnant. It’s better to plan it when the lupus is inactive and to be sure that the medicines they take are allowed during pregnancy. Sometimes, when the patient is below 18 or around 40, or if the patient is invalid, the doctors don’t speak about family planning. But even if the doctors don’t address family planning and pregnancy spontaneously, women with lupus should address questions to the doctors. For example, if they take MMF, methotrexate or CY, it is important to speak with the specialist about contraception, even if they don’t plan to be pregnant in the next months. Things may change quickly!
Q : You speak about “specialist”. Is it better to ask the rheumatologist, the gynecologist, or the midwife?
A : It’s better not to ask doctors or health professionals who have no experience with the problems of lupus pregnancy! Gynecologists and midwives know a lot about pregnancy and delivery, but they are not experts in the pathology of lupus and its treatment! So, if a gynecologist tells a woman to stop Plaquenil®, for example, it is better to first ask the specialist who manages the lupus before stopping the treatment. Plaquenil should never be stopped before or during pregnancy because it prevents flares and has many beneficial effects in the body. Good communication between the lupus specialist and the obstetrician is necessary to avoid contradictory counsel.
Q : Most of the time, pregnant women are really afraid about drugs… And they have close relationships with their midwife. So, if the midwife or a friend tells them to stop taking medicine, they are ready to do that!
A : As said above, a patient should rely on the counsel of those who really know lupus, because people who don`t, have no proof for their statements. Patients must be aware that it is more dangerous for the child when lupus is active or flares than to take medicine. It is well known that stopping Plaquenil® increases the risk of flares and flares are dangerous both for the moms and for the fetus. So it is necessary to continue antimalarials or azathioprine, for example. With regards to corticosteroids, they remain necessary for acute flares, particularly in pregnancy. It is not easy to treat lupus without them. Below 10 mg/a day, corticosteroids are not a problem for the child. But, yes, sometimes, women are so afraid to harm the fetus that they stop all drugs before or during pregnancy. However, that may lead to a flare and greatly increases the risk for adverse pregnancy outcomes like miscarriage, stillbirth or premature birth.
Q : What are the real risks of lupus pregnancy?
A : In fact, 25% of the lupus pregnancies are totally uncomplicated. Another 50% have some active symptoms, mild or moderate, often easy to treat. 25% have severe flares in internal organs that may require therapies with several drugs combined.
Q : What about the biologics ?
A : As a rule, new drugs, as most biological are, are not recommended during pregnancy. So we have only data from animal studies. Some biologics (Belimumab, for example) have no severe side effects on pups of pregnant animals, but we cannot say that they will be safe for pregnant mothers. It seems that side effects of biologicals in the first months of pregnancy are less common than in the last 3 months (because the exchanges between mother and child are less in early pregnancy), but in fact, at present we have not sufficient data.
Q : If there will never be trials on pregnant mothers, does that mean that biologicals will never be prescribed to pregnant women?
A : We will get more data on biologicals in pregnancy because of inadvertent exposure. In fact, even if you tell a woman not to become pregnant during treatment, it doesn’t mean that no woman will become pregnant: either despite the risks or by “accident”, some women will get pregnant during treatment with biological and will deliver babies. That means that in some years time, we will have data about biologicals and pregnancy.
Q : A word of conclusion ?
A : A pregnancy in a lupus patient remains a high risk pregnancy that needs special care. Of course, if you have only cutaneous lupus or inactive lupus, you have fewer risks than if you have lupus in internal organs that is active. But, in any case, you must be carefully monitored by your doctors in order to be able to act as quickly as possible, if something happens during pregnancy. The most important thing is to plan a pregnancy and get a good communication with the doctors who manage the disease during pregnancy.
Interview by Bernadette Van Leeuw - April 2014