Are there any special concerns for HAE during pregnancy?

Jun 24, 2015

Dr. C: This is certainly a topic of interest for all of our HAE patients. The initial onset of symptoms during pregnancy is rare for HAE type I & II however not unusual for HAE with normal C1 inhibitor. It is important to know that laboratory tests can be difficult to accurately interpret during pregnancy in cases of women in whom the diagnosis was not established prior to pregnancy. There are varying accounts in the literature regarding the typical course for pregnancy with HAE. What do you make of this Bruce?

Dr. Z: While the literature does indeed differ, I would say that there is general agreement that attack frequency and location can and often does change during pregnancy. A significant fraction of women experience more attacks during pregnancy, particularly abdominal attacks. On the other hand, some women clearly do better during pregnancy, having few or no attacks.

Dr. C: What I find fascinating is that a given woman may experience improvement in her HAE during one pregnancy and then have the opposite experience during her next pregnancy. Could this variability be due to whether or not the fetus has HAE?

Dr. Z: There have indeed been reports suggesting that women who have increased attacks during pregnancy are more likely to be carrying a fetus with HAE. Conversely, other reports have found this not be true. At this time, we have no ability to predict how severe a patient’s HAE may be during a given pregnancy in an individual woman. Another surprising finding has been the consistent lack of swelling at the time of delivery. While it’s important to have on-demand treatment available in case the woman does have an attack, I don’t treat women prophylactically prior to delivery. This protection quickly disappears following delivery, however.

Dr. C: There does seem to be a consensus that vaginal delivery is surprisingly well tolerated. We unfortunately do not have sufficient data for normal C1 inhibitor patients however only 6% of type I&II patients had triggering of attacks. Let’s talk for a minute about treating HAE patients during pregnancy. How does pregnancy alter your treatment plans?

Dr. Z: In general, nobody likes to use drugs during pregnancy since it’s so hard to know for sure whether they are entirely safe for the mother and the fetus. This certainly applies to HAE. The only HAE medicine, either on-demand or prophylactic, that I’m comfortable using during pregnancy is C1 inhibitor, and that’s because we know that it’s a natural protein that is already present.

Dr. C: Androgens are certainly contraindicated during pregnancy, but isn’t there a literature about the use of tranexamic acid during pregnancy?

Dr. Z: Yes, but most of that pertains to bleeding at the time of delivery or in the immediate postpartum period. In some instances tranexamic acid has been used for bleeding during pregnancy, butt here isn’t sufficient information to assess the safety of this.

Dr. C: What about during lactation if the mother is breastfeeding the baby. What do you do then?

Dr. Z: I continue to treat women who are breastfeeding much like I do during pregnancy. Many of the drugs can be excreted into the breast milk.

Dr. C: Very good. That wraps up our discussion, hopefully we have provided some helpful information for our readers. We look forward to your input, and will be back next ‘question of the week’.

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