Sarcoidosis

INFORMATION FOR WOMEN WHO HAVE SARCOIDOSIS DURING PREGNANCY OR BREASTFEEDING

The information provided below is for readers based in the United States of America. Readers outside of the United States of America should seek the information from local sources.

What is sarcoidosis during pregnancy?

Sarcoidosis a chronic autoimmune disease that is characterized by inflammation with small lumps called granulomas, particularly affecting the lungs, lymph nodes, and skin, although it can affect virtually any organ in the body. Sarcoidosis is not a pregnancy disease, but its an issue for pregnancy, as pregnancy is a double edge sword when it comes to women with the condition. On the one hand, if the disease has damaged organs, such as the lungs and heart, your organ function may deteriorate on account of the increased demands of pregnancy. On the other hand, since pregnancy increases your levels of corticosteroids, the actual disease process causing inflammation with granulomas typically subsides as pregnancy advances.

How common is sarcoidosis during pregnancy?

In the United States, the prevalence of sarcoidosis was measured over an 8-year period (2003-2010) at 678 maternal cases per 7,094,400 births. This comes to 9.6 cases of sarcoidosis per 100,000 births. Since the disease typically is diagnosed during early to middle age adulthood, you may be diagnosed around the time of pregnancy. African Americans have a prevalence three times that of whites. Women are affected more often than men, and so African American women have the highest risk in the US. African American women also tend to have more organs involved compared with other women who have sarcoidosis. Women of Scandinavian, Irish, German, and West Indies descent also have a fairly high prevalence of sarcoidosis. You have an elevated risk of developing sarcoidosis if you are obese. Smoking has been found to reduce the risk of developing sarcoidosis, possibly because nicotine has a protective effect. However, there are a hundred reasons not to smoke whether you are pregnant or not.

How is sarcoidosis during pregnancy diagnosed?

Diagnosis depends on a combination of the clinical presentation (your history and physical examination results), imaging such as chest X-ray (CXR), examination of tissues obtained through biopsies, laboratory tests on blood samples, such as a complete blood count (CBC), a comprehensive metabolic panel (CMP), and liver enzymes. If you are worked up for possible sarcoidosis, your heart will be checked with electrocardiography, Holter monitoring, and echocardiography.

Does sarcoidosis cause problems during pregnancy?

The underlying disease process of sarcoidosis typically subsides during pregnancy, and some women may feel better. On the one hand, if the disease has damaged organs, such as the lungs and heart, your organ function may deteriorate on account of the increased demands of pregnancy.

Does sarcoidosis cause problems for the baby?

Whether or not there are problems for the baby depends on the severity of the disease. If the disease has damaged your lungs or your heart to the point that advancing pregnancy has a negative impact on your heart or lung function, you may have trouble carrying the baby to term. In some cases, termination of the pregnancy may be recommended.

What to consider about taking medications when you are pregnant or breastfeeding:

  • The risks to yourself and your baby if you do not treat the sarcoidosis
  • The risks and benefits of each medication you use when you are pregnant
  • The risks and benefits of each medication you use when you are breastfeeding

What should I know about using medication to treat sarcoidosis during pregnancy?

Sarcoidosis is treated with medications that inhibit the immune system. Of these, corticosteroids are the drugs that are given initially. Corticosteroids must be given carefully during pregnancy, but it is possible to carry out a pregnancy while taking them. For longer-term treatment, other agents are added, such as azathioprine, which may be safe during pregnancy. However, another long-term treatment is methotrexate, which absolutely cannot be given during pregnancy, as it can terminate the pregnancy or cause severe birth defects. Another treatment is anti-tumor necrosis factor (anti-TNF), but not a lot is known about its safety during pregnancy.

Who should NOT stop taking medication for sarcoidosis during pregnancy?

Many women actually may be able to reduce their dosage of corticosteroids or other medications when they become pregnant, but each case must be assessed individually.

What should I know about choosing a medication for my sarcoidosis during pregnancy?

It is important to stay in communication with your health care provider as the release of new studies over time can change the outlook on the role of specific medications during pregnancy.

You may find Pregistrys expert reports about the medications to treat this condition here. Additional information can also be found in the sources listed below.

What should I know about taking a medication for my sarcoidosis when I am breastfeeding?

Often, women can breastfeed while taking corticosteroids, but it means that you need to pump out your milk a few hours after receiving your steroid dose, discard what you have pumped, and then wait for more milk to fill and use that to feed the baby. This may not leave you with enough milk, so you may need to supplement with formula. Or you may choose to avoid breastfeeding and use formula alone.

What alternative therapies besides medications can I use to treat my sarcoidosis during pregnancy?

There is no alternative treatment that is supported by evidence, but many women will improve without any treatment.

What can I do for myself and my baby when I have sarcoidosis during pregnancy?

Follow the instructions of your physicians. Be assured that the condition is treatable, especially when it is recognized early.

Resources for sarcoidosis in pregnancy:

For more information about sarcoidosis during and after pregnancy, contact http://www.womenshealth.gov/ (800-994-9662 [TDD: 888-220-5446]) or contact the following organizations:

Read the whole report
General information

It is very common for women to worry about having a miscarriage or giving birth to a child with a birth defect while they are pregnant. Many decisions that women make about their health during pregnancy are made with these concerns in mind.

For many women these concerns are very real. As many as 1 in 5 pregnancies end in a miscarriage, and 1 in 33 babies are born with a birth defect. These rates are considered the background population risk, which means they do not take into consideration anything about the health of the mom, the medications she is taking, or the family history of the mom or the baby’s dad. A number of different things can increase these risks, including taking certain medications during pregnancy.

It is known that most medications, including over-the-counter medications, taken during pregnancy do get passed on to the baby. Fortunately, most medicines are not harmful to the baby and can be safely taken during pregnancy. But there are some that are known to be harmful to a baby’s normal development and growth, especially when they are taken during certain times of the pregnancy. Because of this, it is important to talk with your doctor or midwife about any medications you are taking, ideally before you even try to get pregnant.

If a doctor other than the one caring for your pregnancy recommends that you start a new medicine while you are pregnant, it is important that you let them know you are pregnant.

If you do need to take a new medication while pregnant, it is important to discuss the possible risks the medicine may pose on your pregnancy with your doctor or midwife. They can help you understand the benefits and the risks of taking the medicine.

Ultimately, the decision to start, stop, or change medications during pregnancy is up to you to make, along with input from your doctor or midwife. If you do take medications during pregnancy, be sure to keep track of all the medications you are taking.


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