One of the most common health concerns for women of childbearing age is an autoimmune disorder. According to the American Autoimmune Related Disorders Association1, authorities estimate that around one in five people—two thirds of them women—are living with an autoimmune disorder in the United States. Unfortunately, autoimmune disorders are not as rare today as in previous generations1. The reason for the increase in frequency of autoimmune disorders is unknown. Mothers with autoimmune disorders face unique challenges with regard to pregnancy and breastfeeding. This subset of mothers is often overlooked in standard parenting literature. This is a brief introduction to autoimmune disorders to give a better understanding of the issues surrounding the intersection of autoimmune disorders and motherhood.

What is an autoimmune disorder?

The immune system is responsible for fighting off infections as well as identifying and destroying abnormal cells, like cancer cells2. The ability to correctly identify normal “self” cells and invading microorganisms or abnormal cells as “non-self” cells is crucial to normal, correct functioning of the immune system. In an autoimmune disorder, the immune system gets ‘confused’ and is not able to tell the difference between normal and abnormal “self” cells2. This confusion means that the body begins to attack itself, causing an astonishing array of symptoms and diseases, ranging from relatively mild to life-threatening. In fact, autoimmune diseases are counted in the top ten causes of death for women under 651. No one knows what causes this confusion, except that these disorders are caused by a combination of genetic influence and environmental, not any one trigger2.

What are some examples of an autoimmune disorder?

There are over 100 different kinds of autoimmune disease1. Here are some examples:

Type 1 diabetes: the immune system attacks the pancreas or insulin receptors (sometimes both), resulting in the inability to make and use insulin 3 .

. Hashimoto’s thyroiditis and Graves’ disease: conditions in which the immune system attacks the thyroid gland, resulting in under or overproduction of thyroid hormone 2 . Thyroid hormone is responsible for a whole host of functions, including metabolism and neurological development in the fetus and newborn.

. Thyroid hormone is responsible for a whole host of functions, including metabolism and neurological development in the fetus and newborn. Ulcerative colitis and Crohn’s disease: collectively referred to as “inflammatory bowel disease”. The immune system mistakenly attacks the digestive system, causing painful abdominal cramps, digestive problems, and sometimes nutritional deficiencies 4 .

. Multiple sclerosis: the target is the nervous system. Interruptions in nerve transmissions result in a variety of symptoms, including numbness, pain and paralysis 1 . It is usually intermittent at first and often progresses to permanent disability 5 .

. It is usually intermittent at first and often progresses to permanent disability . Rheumatoid arthritis: generally results in the body attacking the joints, causing joint deformation, debilitating pain, and stiffness, 2 .

. Systemic lupus erythematosus (lupus): any system of the body may be attacked, from the heart and lungs to kidneys, skin, digestive or nervous system, causing damage and malfunction to that system2.

How does life change with an immune disorder?

Life with an autoimmune disorder varies with the disorder. Usually, a woman who looks perfectly healthy will start having vague symptoms that come and go and are hard to describe1. Often, she will have an idea that something is wrong, but because it is hard to describe the symptoms, she will put off talking to her doctor about it until they start to affect her everyday living. Thus begins the diagnostic odyssey.

Diagnosis with an autoimmune disease can be a long, difficult process. While some are able to get a diagnosis within weeks of the onset of symptoms, for others the process takes years of frustrating visits to numerous doctors. It isn't uncommon for sufferers of some diseases to be incorrectly labeled as drug seekers, chronic complainers, or worse, told that the disease is “all in the head”1. Treating the disease is not always easy, either. Some diseases simply require replacement of hormones that aren't being produced, like autoimmune hypothyroidism. Others, like lupus, may require life-long suppression of the immune system, along with management of the many symptoms that result from organ damage2. Finding the right medications to manage symptoms is an adventure in and of itself, with scary-sounding side effects like the possibility of cancer or heart problems. It is not uncommon for people with autoimmune disorders to go months or years at a time with minimal or no symptoms, followed by what’s called a “flare up,” an exacerbation of the disorder when the symptoms get very difficult to deal with and may keep a person bed or house-bound until it recedes. Others may not get a break, causing them to be unable to keep a job or manage around the house without help.

My own journey with autoimmune disease began as a postnasal drip and headaches when my first daughter was around a year old. Then a few months later, a vague, aching pain began, deep in my leg muscles at night. Sometimes I would get tingling nerve pain and my arms or legs would “fall asleep.” At first, the symptoms weren't too bad, and I passed it off as aches from exercising, bad posture, and allergies. By the time she was two, I realized that not only were the symptoms getting worse, keeping me from being able to sleep at night, but the symptoms didn't correlate with exercise or anything else. They were also starting to affect my day-to-day living, interfering with my ability to attend school, go to social engagements, and even interact with my family. Over the counter medications didn’t help, so I sought treatment, but was unable to find a doctor who would help. After many doctors visits, trials with different drugs and nasal sprays were ineffective. I just learned to cope. Eventually, when my daughter was four, I found a rheumatologist who diagnosed me with “undifferentiated connective tissue disorder” because although my lab results indicated something autoimmune, my symptoms didn't fit anything on his list. My symptoms finally became manageable with the drugs he prescribed. Because my disease wasn't “bad enough” to affect anything vital, however, getting a precise diagnosis was not a priority.

In contrast to my years-long (and still incomplete) journey toward diagnosis, a friend of mine, Joanna, started having symptoms one November and was diagnosed by the next month with ulcerative colitis. This disease is particularly difficult to deal with when it flares. Joanna describes what it’s like: “I get lots of pain, cramping and bloody stool, with times of flare ups which can keep me on the toilet for over an hour at a time and many times through the day and night. I get very tired because of dealing with the pain and being on the toilet, and I worry about taking care of my daughter and getting her to school on time and being able to pick her up. Leaving the house can be scary just for things like grocery shopping; it can take me much longer than everyone else because I may have to use the restroom 2-5 times while in the store. The pain can be very severe. There were times when I was in so much pain I was trying not to scream; it was like giving birth multiple times a day, where [her husband] was threatening to call 911 and send me to the hospital.”

What do these changes mean for women of childbearing age?

The hormonal activity inherent in menstrual cycles is believed to be the reason women of childbearing age are at increased risk of autoimmune disease7, 8, 9. Years ago, women with autoimmune conditions were simply advised not to get pregnant (5, 11). With modern medicine, doctors and researchers are finding that this advice is outdated5-7, 10, 11. Unfortunately, many women are still incorrectly advised that their condition is a complete contraindication to pregnancy and breastfeeding.

When women with autoimmune disorders want to get pregnant, they are advised to plan pregnancies carefully. They are told to wait until they are on a pregnancy-safe medication, or to wait a certain number of months after stopping a medication that is expected to cause birth defects. They may be told to wait until their disorder has been in remission, and they can find a good team of doctors to take care of them10.

Can a woman with an autoimmune disorder safely carry her baby to term and breastfeed?

Although many doctors mistakenly tell women that it is not safe to get pregnant or breastfeed simply because of their diagnosis, this is not evidence-based advice. Some doctors insinuate or outright tell mothers that if they breastfeed, the antibodies in their system will get into the baby and cause an autoimmune disease in the breastfed infant; this is not true12. Other health-care workers may incorrectly tell women that they won’t be able to continue taking the drugs that control their disorder if they choose to get pregnant or breastfeed. Some women with advanced disease states may be counseled against pregnancy due to symptoms such as uncontrollable high blood pressure or kidney damage. According to experts well-versed in current research, a diagnosis of an autoimmune disorder in and of itself is never a contraindication to pregnancy or breastfeeding10. In addition, current research indicates that many drugs previously believed to be unsafe for pregnant or nursing mothers are, in fact, no more likely to cause birth defects than other drugs considered safe5-7, 11, 13, 15. Most women with autoimmune disorders can have a baby without serious side effects, though some diseases require careful monitoring,7-10. In fact, for some disorders, like multiple sclerosis, rheumatoid arthritis, and inflammatory bowel disease, the progression of symptoms can be slowed or stalled by pregnancy and exclusive breastfeeding6,8,9,15,16. This is thought to be associated with the hormonal shift that accompanies lactational amenorrhea7,8,9,15. While there are some risks to the fetus, including the risk of prematurity and low birth weight, most risks can be managed quite well6,7,10,11,13. Risks from medication can be managed during breastfeeding, as well5, 10, 13, 14, 15, 17. Some autoimmune diseases—those relating to hormonal function—may interfere with milk supply, however 19, 20. This occurs when a mother’s disease interferes with normal levels of thyroid or insulin, for example. This should be managed by correcting the hormone to its normal levels, but many women are unaware of this possibility, especially with diabetes or pre-diabetes20.

One often-repeated concern regarding breastfeeding has been made which deserves special attention. Early studies of the hormone prolactin on nursing mice and in women with rheumatoid arthritis indicated that prolactin, and therefore breastfeeding, increased the severity and number of flares postpartum for women with rheumatoid arthritis who were having their first child18. This finding was often quoted by later researchers without much discussion6, 15. Frustratingly, not a single one of these studies controlled for partial breastfeeding versus exclusive breastfeeding, although they did divide breastfeeding mothers into those breastfeeding their first child versus those breastfeeding subsequent children. There was some acknowledgement that the sensitivity to prolactin may be genetic. In patients with multiple sclerosis, partial and exclusive breastfeeding mothers had different outcomes5, 8, 9.

Additionally, many women who chose to breastfeed in these earlier studies discontinued their medications in order to do so, making it difficult to distinguish between symptoms linked to breastfeeding and those due to the lack of medication. In studies of women with inflammatory bowel disease, breastfeeding was first believed to be associated with increased disease activity postpartum, but further analysis showed that when medication use was taken into account, the difference in disease activity was negligible15, 16. This underscores the importance of critically examining studies relating to disease activity and breastfeeding. Unfortunately, there are very few well-done studies to date relating to disease activity and breastfeeding specifically. Research in this area is starting to increase, but may not be available for several years. The reality is that the hormonal interplay of postpartum and breastfeeding with the immune system is so complex that we are just barely beginning to scratch the surface.

During my second pregnancy, my symptoms improved so much that I was able to stop taking daily medications. In fact, thanks to the hormonal influence of breastfeeding, I have not yet needed to start taking them again, even though my daughter is now 14 months old. Breastfeeding has actually proved to be pain-relieving for me. I often come home from school fatigued and in pain, to flop into my bed with my baby girl and nurse, only to find my energy increased and my pain gone. I tried finding an explanation for this phenomenon, but research in this area is scarce, at least as far as mothers are concerned. Joanna was able to control her symptoms throughout her pregnancy with the medication she was taking, but she suffered a very bad flare immediately postpartum, necessitating some creative thinking in order to breastfeed her child. She is now on a different medication.

What are a mom's major concerns when she is dealing with an immune disorder and an infant?

Dealing with symptoms and worries about the side effects of medication are probably the top two concerns of mothers with autoimmune disorders. Getting accurate, evidence-based information is a challenge because many doctors are not well-versed in current research in these areas. Despite the ameliorating effect breastfeeding has on my pain, I don’t always have time to breastfeed the pain away. As a busy mom, I still have to weigh my symptoms against taking medication occasionally. I know that at some point, the hormonal influence which keeps the majority of symptoms at bay will decline and I will need to decide whether to discontinue breastfeeding, find a breastfeeding compatible medication, or take my chances continuing to breastfeed with a poorly researched medication.

Joanna, on the other hand, had to deal with her symptoms much sooner. Immediately postpartum, she suffered such a severe flare-up that she had to get a doctor’s permission to nurse her one-day-old baby on the hospital toilet. Joanna decided that it would help her mental state to give an occasional bottle of formula as she dealt with her symptoms postpartum. However, by taking medication safe to use during pregnancy and beyond, she was able to continue breastfeeding her daughter for a year. Her doctors’ support was very important as they encouraged her desire to breastfeed. Her daughter is now a vibrant, healthy six year old.

Many mothers with inflammatory bowel disease are hesitant to try breastfeeding. Joanna has this to say: “Don’t be afraid to breastfeed. As long as you can find a medication that is compatible with breastfeeding, the medication will keep you healthy, and then your baby will get what he or she needs and be able to thrive. But don’t let yourself feel guilty if you are breastfeeding and need to supplement with an occasional bottle of formula. And if you need a stronger medication that is not compatible with breastfeeding, remember that it is better to have a healthy mother whose baby is on formula. You are doing the best that you can with the body you have been given.”

How can a Breastfeeding USA Counselor be of help?

Breastfeeding USA Counselors offer encouragement and share evidence-based information. They listen to and empathize with mothers’ concerns. They discuss problems that arise or might potentially arise and think of ways to mitigate them ahead of time. For example, if a mother has concerns that she might not always be available to breastfeed as needed, a Breastfeeding Counselor can provide information about pumping, both to increase and maintain the mother’s milk production, and to ensure that there is extra milk in the freezer so baby can be supplemented when necessary. If a mother is in pain, a Breastfeeding Counselor can help her find alternative nursing positions so that she can comfortably breastfeed. Breastfeeding Counselors reassure mothers that even if they do need to supplement with formula, as long as they are continuing to breastfeed, their babies will be getting important immunological and nutritional support. They can also help mothers to find ways to make sure that occasional supplementation does not begin to interfere with milk production.

Breastfeeding USA Counselors are often the first line of support and are aware that some autoimmune diseases may lead to decreased milk production. They cannot diagnose an autoimmune condition or hormonal imbalance, but they are able, for example, to refer a mother to her doctor when she has unexplained low milk production to rule these out possible causes, even if she does not have a previous history of these disorders.

In addition, Breastfeeding USA Counselors help mothers find vital information about medications from sources such as Medications and Mothers’ Milk, the Infant Risk Hotline, and LactMed. This information can help mothers talk to their doctors about finding the right medications to both control their symptoms and safely continue breastfeeding. There is support available for mothers with autoimmune diseases.

References

1. American Autoimmune Related Disorders Association. (2013). Autoimmune Information: Questions and answers.

2. Copstead, L. E. & Banaski, J. (2010). Pathophysiology (4th ed). St. Louis, MO: Elsevier.

3. Paddock, C. (2011). Is Type 2 diabetes an autoimmune disease?

4. Crohn’s and Colitis Foundation of America. (2013). What are Crohn’s and Colitis?

5. Houtchens, M. (2013). Multiple sclerosis and pregnancy. Clinical Obstetrics & Gynecology, 56(2), 342-349. doi:10.1097/GRF.0b013e31828f272b

6. Elliott, A., & Chakravarty, E. (2010). Management of rheumatic diseases during pregnancy. Postgraduate Medicine, 122(3), 213-221. doi:10.3810/pgm.2010.05.2160

7. Østensen, M., Brucato, A., Carp, H., et al. (2011). Pregnancy and reproduction in autoimmune rheumatic diseases. Rheumatology, 50(4), 657-664.

8. Langer-Gould A, Huang SM, Gupta R, et al. (2009). Exclusive Breastfeeding and the Risk of Postpartum Relapses in Women with Multiple Sclerosis. Archives of Neurology. 66(8):958-963. doi:10.1001/archneurol.2009.132.

9. Langer-Gould, A., Gupta, R., Huang, S. et al. (2010). Interferon-gamma-producing T cells, pregnancy, and postpartum relapses of multiple sclerosis. Archives of Neurology, 67(1), 51-57. doi:10.1001/archneurol.2009.304

10. Levy, D. (2007) Clinical Feature: Autoimmune diseases complicate pregnancy.

11. Borisow, N., Döring, A., Pfueller, C., Paul, F., Dörr, J., & Hellwig, K. (2012). Expert recommendations to personalization of medical approaches in treatment of multiple sclerosis: an overview of family planning and pregnancy. The EPMA Journal, 3(1), 9. doi:10.1186/1878-5085-3-9

12. Newman, J. (2009). Breastfeeding and illness.

13. Keeling, S. O., & Oswald, A. E. (2009). Pregnancy and rheumatic disease: “by the book” or “by the doc”. Clinical Rheumatology, 28(1), 1-9. doi:10.1007/s10067-008-1031-9

14. Makol, A., Wright, K., & Amin, S. (2011). Rheumatoid Arthritis and Pregnancy: Safety Considerations in Pharmacological Management. Drugs, 71(15), 1973-1987.

15. Moffatt, D., Ilnyckyj, A., & Bernstein, C. (2009). A Population-Based Study of Breastfeeding in Inflammatory Bowel Disease: Initiation, Duration, and Effect on Disease in the Postpartum Period. American Journal Of Gastroenterology, 104(10), 2517-2523. doi:10.1038/ajg.2009.362

16. van der Woude, C., Kolacek, S., Dotan, I., Oresland, T., Vermeire, S., Munkholm, P., & ... Dignass, A. (2010). European evidenced-based consensus on reproduction in inflammatory bowel disease. Journal Of Crohn's & Colitis,4(5), 493-510. doi:10.1016/j.crohns.2010.07.004

17. Wallace, D., Gudsoorkar, V., Weisman, M., & Venuturupalli, S. (2012). New insights into mechanisms of therapeutic effects of antimalarial agents in SLE. Nature Reviews. Rheumatology, 8(9), 522-533. doi:10.1038/nrrheum.2012.106

18. Brennan, P., & Silman, A. (1994). Breast-feeding and the onset of rheumatoid arthritis. Arthritis And Rheumatism, 37(6), 808-813.

19. Marasco, L. (2006). The impact of thyroid dysfunction on lactation.

20. Nordqvist, C. (2013). Insulin’s role in making breast milk.

Published February 2014.