Pregnancy
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 haematologist. 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 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 PNH on to a baby. Tests have shown that eculizumab does not cross the placenta or enter breast milk.
In 2014, this research study concluded that “eculizumab appears safe to use in pregnancy in PNH and does not appear to cross the placenta in significant quantities to block complement or to be excreted in breast milk. Higher doses may be required later in pregnancy to prevent hemolysis”. Watch Dr Kelly from St James’s Hospital in Leeds speak about this study here.
Fertility
Neither men nor women with PNH have reduced fertility specifically due to PNH. 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.
Contraception
The safest methods of contraception for those with PNH 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 however please speak to your PNH team about your specific situation.
Perimenopause and Menopause and PNH
What is perimenopause?
Perimenopause is when you have symptoms before your periods have stopped. You reach menopause when you have not had a period for 12 months. Menopause and perimenopause can cause symptoms like anxiety, mood swings, brain fog, hot flushes and irregular periods. (NHS)
What is menopause?
Menopause is when your periods stop due to lower hormone levels. This usually happens between the ages of 45 and 55. It can sometimes happen earlier naturally. Or for reasons such as surgery to remove the ovaries (oophorectomy) or the uterus (hysterectomy), cancer treatments like chemotherapy, or a genetic reason. (NHS)
What is HRT?
Hormone replacement therapy (HRT) is a treatment used to help menopause symptoms. It replaces the hormones oestrogen and progesterone, which fall to low levels as you approach the menopause. (NHS)
Educational links, most up to date research and advice
The following links are for general overview and education. They are not specific to women with PNH.
NICE most up-to-date guidance on perimenopause and menopause
Menopause: How your body changes and what you can do
PNH specific information
PNH affects every patient differently. Your PNH medical team and your GP should discuss a HRT plan specific to you. HRT benefits should outweigh the risks which may differ from patient to patient.
You might be more comfortable raising and discussing these issues with a female doctor.
It is also possible to be referred to the Menopause and Premenstrual Syndrome Service on the NHS and you should ask your GP for a referral.
HRT prescribing
If you pay for NHS prescribed HRT more than 3 times in 12 months, an HRT Prescription Prepayment Certificate (HRT PPC) could save you money. All details could be obtained via the link below