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In PNH, pregnancy is associated with a risk of complications. This is partly due to the fact that the risk of developing a blood clot during pregnancy is higher anyway. Therefore this risk is compounded with PNH where blood clots are also possible. In rare cases, pregnancy may not be advisable however this should be discussed individually with your clinican. It is important to inform your doctors if you intend to become pregnant as additional considerations may need to be taken into account. In almost all patients with PNH, pregnancy is potentially high risk and will be followed closely by your PNH doctors as well as an obstetric team to prevent complications and reduce this risk. Additional treatments during pregnancy may include blood and platelet transfusions, folic acid, heparin and eculizumab. It is important to be reviewed regularly by a haematologist and obstetric teams.

As PNH is not inherited there is no risk of passing on PNH to a baby. Tests have shown that eculizimab does not cross the placenta or enter the breast milk.

As at May 2013, 15 babies had been born to mothers being treated with eculizumab.

The following paper was presented at The American Society of Haematology conference in October 2014 -Eculizumab Treatment Improves Outcomes of Pregnancy in Patients with Paroxysmal Nocturnal Hemoglobinuria. https://ash.confex.com/ash/2014/webprogram/Paper72120.html


Neither men nor women with PNH have reduced fertility specifically due to the condition. However, long term illness or previous treatment may reduce fertility. Young men with PNH may find it difficult to maintain an erection but there are now effective treatments for this problem.


The safest methods of contraception are the progesterone only pill, mirena coil or barrier contraceptive methods eg. condoms. The combined oral contraceptive pill, which contains oestrogen, should be avoided as it can increase the risk of developing a blood clot.



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