IPIG 2025 | Practical advice for physicians treating pregnant patients with PNH

It used to be that pregnancy was seen as a contraindication for women with PNH because of the high mortality both in the mother and the baby. So a number of years now we had a paper, an international coming together of specialists who had had patients treated with eculizumab in pregnancy and that is still held to be the sort of the gold standard treatment for to get a patient through pregnancy and have the mother and the baby both with us at the end of the pregnancy. So eculizumab looks safe to use in pregnancy. You need very close monitoring. You need close liaison with the obstetric team. I would advise all clinicians both to put people on eculizumab, if they’re not already on eculizumab when the patient becomes pregnant, but also to anticoagulate with heparin. Some people would use a prophylactic dose, some people use a treatment dose, some people use a heparin dose in the middle of that. I don’t think we can distinguish which one’s better, but I do think treating with heparin is better than not having heparin alongside eculizumab. You need to be careful in the third trimester because as the physiological changes in the mother occur, you often need higher doses of eculizumab in that third trimester. And then it’s important both to continue with anticoagulation and eculizumab for 12 weeks after delivery because that’s the highest risk period for thrombosis.

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