Sarcoidosis And Pregnancy: Considerations For Women With Sarcoidosis Who Are Pregnant Or Planning Pregnancy

Introduction

Pregnancy can be a wonderful experience for mothers, but if you have a medical history of sarcoidosis, you may have questions. Sarcoidosis can increase the likelihood of complications during pregnancy. This article will inform you about these potential complications and how to manage them to make the most of your pregnancy.

What is sarcoidosis?

Sarcoidosis is a rare autoimmune condition that can affect various parts of the body.¹ It typically causes swellings,  known as granulomas, to form in the chest, particularly affecting the lungs and surrounding lymph nodes. However, it can also cause changes in the heart, kidneys, eyes, and skin. The exact cause of sarcoidosis is unclear, but it is believed to result from autoimmune changes that may be inherited or caused by environmental factors, such as previous infections.² The condition typically affects adults between 25 and  50 years of age and is most commonly seen in individuals of African or Scandinavian descent.³ 

How can sarcoidosis affect my pregnancy?

Pregnancy causes changes in the way your immune system is regulated.⁴ This is a normal and important aspect of pregnancy, as it alters your immune system to prevent harm to the baby. These changes may sometimes result in an improvement in the symptoms of sarcoidosis, although robust data is lacking on whether pregnancy significantly impacts the overall course of the disease.⁵

Although some symptoms may improve during pregnancy, this will not be the case for everyone. You may still experience worsening of your sarcoidosis symptoms. Additionally, you are at an increased risk of certain pregnancy-related complications, which we discuss in more detail later in this article. For these reasons, it is important to work closely with your medical team during your pregnancy (and ideally even a few months before) to ensure the best outcomes for you and your child.

What can you do to optimise your pregnancy before conception?

With any long-term health condition, discussing the decision to have a baby with the relevant healthcare teams can help ensure that everything is optimised to maximise the chances of conception and a healthy pregnancy. This process is referred to as preconception counselling⁶ and is typically conducted by a team of specialists including doctors, midwives, and specialist nurses, who:⁷

• Evaluate the current state of your sarcoidosis, including understanding your symptoms and the areas where the disease is currently most problematic
• Perform a clinical examination where appropriate, including assessing your blood pressure
• May perform blood tests, typically to check your kidneys, liver, and iron levels
• May conduct lung function tests if your disease has affected your lungs
• May request medical imaging, such as chest X-rays, to assess the extent of the sarcoidosis
• May order tests of heart function if your sarcoidosis is known to affect the heart; this can include a heart trace (ECG) or a heart scan (echocardiogram)
• Review any medications you are currently taking, making changes to doses, discontinuing, or switching therapy as appropriate
• Discuss supplements to assist with conception and the development of your baby
• May also outline a care plan for the pregnancy, including delivery 

Does sarcoidosis directly affect my chances of miscarrying?

There is a lack of robust data on this topic however, small studies have indicated that the miscarriage rate in sarcoidosis patients is similar to that of the general population.⁸ As discussed further below, certain medications used to control sarcoidosis may be potentially harmful to the developing baby and may need to be reduced or switched when you start trying to conceive.

Sarcoidosis medications and pregnancy

Many individuals with sarcoidosis can control their symptoms with medications. Every treatment involves balancing benefits and risks, but certain medications can be very harmful to babies and may need to be reduced, substituted, or even stopped by your healthcare provider. The most commonly used medications to control sarcoidosis during pregnancy are corticosteroids, which have been proven safe to use in several clinical trials.⁹ Azathioprine may also be used, with recent data suggesting it is safe during pregnancy and breastfeeding.¹⁰ Other drugs, such as methotrexate¹¹ or mycophenolate,¹² are toxic to a developing baby, and you will typically be switched to an alternative. If any changes are made to your medication regimen, a plan will usually be made to restart these medications at the pre-pregnancy dose after you have delivered your baby.  

What if I am having a sarcoidosis flare?

Healthcare providers will often aim to stabilise the disease before you conceive to minimize the risk of complications during pregnancy. Some medications used to achieve this are dangerous during pregnancy, so you may be advised to wait a few months before trying to conceive.

What supplements should I be taking?

Supplements such as folic acid are recommended during conception.¹³ Aspirin should be taken from 12 weeks onward.¹⁴ However, you should avoid taking calcium and vitamin D, as these can raise your calcium to dangerous levels (known as hypercalcaemia) when combined with sarcoidosis.¹⁵

How is sarcoidosis managed during pregnancy? 

You will need regular clinical assessments of your sarcoidosis from conception through pregnancy. These assessments help monitor the disease, check for any flares (and treat them if needed), detect any pregnancy-related complications, and ensure that the commonly affected organs (such as the lungs, heart, and kidneys) remain healthy. If you are taking medication to control sarcoidosis, your treatment will be reviewed and adjusted as needed.

As with any pregnancy, it is important to avoid smoking,¹⁶ which can damage the baby’s placenta and slow growth, and alcohol consumption, which can affect brain development, and is associated with cognitive impairment later in life).¹⁷ A healthy diet, particularly one rich in iron (such as red meats and leafy greens like spinach and kale),¹⁸ is also recommended.

Having sarcoidosis can increase your risk of blood clots.¹⁹ While this may not require treatment on its own if you have other risk factors for clots, your medical team may start you on blood-thinning medications.

What are the potential complications?

Sarcoidosis increases the risk of pregnancy complications, such as high blood pressure disorders (including pre-eclampsia), blood clots ( referred to as venous thromboembolism or VTE), and heavy blood loss during labour (postpartum haemorrhage).²⁰ There is also an increased risk of preterm birth and low birth weight, which can make the first days of life challenging.

What should I do if I am feeling unwell?

Many healthcare providers have a low threshold for assessing any pregnant patient with a medical history of sarcoidosis. If you are in doubt, contact your local healthcare centre for advice. Many centres will prepare for any complications by performing regular blood pressure and urine checks. Some centres may also perform blood tests if they are concerned about the development of a new complication.

Managing labour and delivery

Ideally, your baby should be born after 37 weeks to allow for full development in the womb.²¹ However, sometimes it may be necessary to deliver the baby earlier, typically due to pregnancy-related complications or a deterioration in your well-being, which is more common if you have severe sarcoidosis. Depending on the urgency of the situation, how far along you are in your pregnancy, and the safety of delivering in your local area, this may be performed by caesarean section.⁷ If no complications develop during your pregnancy, you should be able to have a normal vaginal delivery. However, it is recommended to give birth in a location with a surgical team nearby in case of any unexpected developments during labour. This would typically be on an obstetric (doctor-led) labour ward.  

What should you expect after you have given birth?

You will continue to be monitored after giving birth, with follow-up appointments arranged by the multidisciplinary team overseeing your care. Keep in mind that once your baby has been born, the dampening effect on your symptoms caused by your pregnancy will no longer be in effect. This means you may experience a flare-up of your pre-pregnancy symptoms.⁸

If you stopped any medications during your pregnancy, it is advisable to discuss restarting them with your medical team. If you choose to breastfeed (including expressing milk), check with your healthcare provider that it is safe to do so, as some medications may be present in breast milk in small amounts.²²

Emotional and psychological support

Pregnancy is not easy, and it is okay to not feel okay. Having a network of family and friends can be helpful, and there are antenatal and postnatal classes that offer additional support. If you experienced any traumatic events during birth, please raise this with your healthcare team. Many hospitals have counselling services specifically tailored to birth experiences, created in line with national recommendations for mental health support,²³ which you can access at the time of delivery or several months later if needed.  

Summary

Although the symptoms of sarcoidosis may ease, the risk of complications is increased during pregnancy. It is important to engage with healthcare providers as early as possible so that an individualised care plan can be developed for your pregnancy. Despite the risks, with regular monitoring and active engagement with healthcare providers, these risks can be mitigated.