Lupus: Contraception and planning for pregnancy

Published Feb 2, 2021 • By Clémence Arnaud

Lupus is a rare disease affecting about 1.5 million people in the USA. It is an autoimmune disease whose occurrence is influenced by many factors.

How do hormones impact lupus? What contraception is it best to take when you have lupus? How can you prepare for and manage your pregnancy when you have lupus?

We tell you everything in our article!

Lupus: Contraception and planning for pregnancy

What is lupus?

There are different types of lupus that exist: lupus that is limited to the skin, such as discoid lupus erythematosus (DLE, also known as chronic cutaneous lupus erythematosus or CCLE), lupus that affects many systems in the body, such as systemic lupus erythematosus (SLE), as well as drug-induced lupus or neonatal lupus.

SLE is the most common form of lupus and as the name suggests, it affects different parts of the body. For example, symptoms can occur in the joints, skin, blood vessels, heart and many other organs. 

Lupus mainly affects women: women are ten times more affected by lupus than men. In addition, lupus most often affects women of childbearing age, between 15 and 40years old.

Lupus and hormones: Why are women more affected than men? 

Female hormones:

  • Estrogens: including estradiol, estriol and estrone
  • Progesterone


Source: Le cycle menstruel - Larousse

The concentration of these hormones changes according to the moment in a woman's menstrual cycle. In addition, they also vary according to the time of a woman's life. For example, hormones levels drop during menopause.

A potential link between estrogens and lupus is being studied, with findings so far showing a potentially higher prevalence of lupus in women with high estrogen levels and a low prevalence of lupus after menopause. However, the relationship between hormones and immunity remains difficult to fully understand.

Which contraceptive method should you choose when you have lupus?

Some lupus treatments are teratogenic (methotrexate, thalidomide, cyclophosphamide, mycophenolic acid) meaning that they should not be prescribed to pregnant women. Indeed, these treatments can have an impact on the proper development of the fetus. Women of childbearing age must therefore absolutely use contraception.

Oral contraception has long been forbidden for patients living with SLE. At present, different therapeutic alternatives are possible for women of childbearing age:

Oral contraception:

  • Combined oral contraceptive pills (Loestrin, Yaz, Ortho Tri-Cyclen): they combine a progesterone and an estrogen (whether synthetic or natural) and are the most widely used form of contraception in the UK. There are several variations of combined pill depending on the progestogen used. In addition, they can be monophasic if the amount of hormone remains the same throughout the cycle, biphasic or triphasic if the amount of hormone changes during the cycle.
  • Progestin-only pills (Micronor, Slynd): the most commonly used progesterone-only pills are desogestrel and levonorgestrel. They are used in very low doses and need to be taken throughout the menstrual cycle. It takes one month after the first dose for the contraceptive effect to be 100% effective.

Progesterone-only pills are most often prescribed for women with lupus. Combined oestrogen-progesterone pills can, however, be used if there is no history of thrombosis, antiphospholipid syndrome or severe manifestations of lupus.

Other contraceptive methods:

  • Intrauterine devices (IUD): these may be hormonal or copper-based. Hormonal devices release small doses of levonorgestrel and can also be used in lupus patients. IUDS are inserted for 4 to 10 years.
  • Progestin implants: this is a small device (a 4 cm long stick) that is placed under the skin on the inside of the arm. This device is placed for a maximum of 3 years.

How to best prepare for pregnancy?

As mentioned previously, many lupus treatments cannot be prescribed to pregnant women. Systemic lupus develops in relapses or flare-ups and is associated with higher maternal and fetal mortality.

One of the goals of lupus care is for patients to understand the issues and potential risks of a pregnancy if it is poorly managed. It is important for patients to know how to identify the warning symptoms that should lead them to visit their OB-GYN. Finally, one of the objectives is for patients to be aware of treatments that are contraindicated during pregnancy and breastfeeding. 

A pre-conception consultation should be set up to assess the possibility of a future pregnancy with good lupus care. During this visit, several points will be evaluated:

  • Making sure that the patient is up to date with her vaccinations.
  • Introducing folate supplements (also called vitamin B9). The need for vitamin B9 increases during pregnancy, as it plays an important role in the development of the fetus' brain and nervous system.
  • Making sure that there are no contraindications to pregnancy. 

Pregnancy is not advised in the following cases: a recent lupus flare-up, corticosteroid dependence (>0.5 mg/kg/day), a glomerular filtration of < 40 mL/min/1.732, severe high blood pressure, poorly controlled pulmonary hypertension or valvular heart disease.

Once conception efforts are underway, monthly monitoring by a multidisciplinary team should be put in place.

Do not hesitate to discuss with your health professional, doctor or pharmacist to find the contraception that is best for you.

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