Teresa Orth, MD, PhD

February 17, 2019

My mother died six weeks ago. No, she wasn’t pregnant, but she was the inspiration for the ebook I recently wrote about autoimmune disease and pregnancy [1]. She had struggled with a lupus-like illness, a rare bone marrow blood disorder, debilitating arthritis, and unrelenting fatigue for over 3 years before ultimately succumbing to her illnesses.

My mother was a strong woman who was diagnosed with severe and rare autoimmune diseases in her 50s. She became frustrated by many of her physicians’ lack of familiarity with her rare diseases including myelodysplastic syndrome (a rare blood disorder requiring chronic blood transfusions –nearly 60 units– and even chemotherapy), intermittent palindromic rheumatoid arthritis (a debilitating and painful diagnosis), and Sweet syndrome (a poorly understood rash-producing illness associated with high fever). My mother went from working two jobs that were physically active to becoming disabled and walking with a cane, and ultimately using a wheelchair in the span of three short years. In the final weeks of her life, she was bedridden.

While my mom was finished with her childbearing plans, her experience made me see my high risk pregnancy patients with autoimmune disease in a new light. I am a Maternal Fetal Medicine physician, also known as a Perinatologist, or simply a high risk pregnancy doctor [2]. Many of my pregnant patients found themselves experiencing worsening pain, fatigue, and suffering during pregnancy. At times they received conflicting advice from disjointed caregivers and health practitioners. Some of these women became disabled within a span of months and went from the joy of expecting a healthy baby to the fears of death and disability, and not being able to thrive in their new role as a mother. I wanted to help them and spent more time researching medications, therapies and advice to give them the best care and options available to help them to have a healthy mom and healthy baby.

Step 1: Decide to get pregnant

The first step in deciding to have a healthy and successful pregnancy for women with autoimmune disease can begin before you even start trying to get pregnant. Women who struggle with autoimmune disease including type 1 diabetes, lupus, rheumatoid and non-rheumatoid arthritis, multiple sclerosis, or any of the other 100+ autoimmune conditions [3] can protect themselves from death and disability by planning their pregnancy BEFORE they are staring at the positive pregnancy test. Nearly 50% of pregnancies in the United States are unplanned [4], so this can be a challenge.

There can be some resistance to planning pregnancy in women with chronic medical diseases. Sometimes it is not for lack of the woman trying to get answers. Medical doctors and health care practitioners are highly segregated into specialities of care. Pregnancy is often relegated to obstetrics and gynecology and is not a common core teaching in many other medical specialities. Ob/Gyns spend most days seeing dozens of pregnant women, but other specialists, such rheumatology of neurology, might go months (or years) before even seeing one pregnant patient. So pregnancy planning questions can seem particularly challenging when they become part of a routine follow up visit. This doesn’t necessarily mean women with autoimmune disease shouldn’t ask. It just means that asking in ways that are more likely to get a response might be helpful such as “what is your experience in using my medications in a pregnant woman?”

The other option is to go to a pregnancy specialist for a pre-conception consultation. This involves bringing all your current medications, recent lab work, and any special accommodations that you require to a doctor who specializes in answering pregnancy-related questions. Some Ob/gyn doctors are adept at answering these questions. However, many refer to high risk ob/gyn doctors [2], especially if the woman is on multiple medications or has some deficits due to the chronic illness. This is an excellent chance to discuss if medications should be changed prior to conception and what supplements should be added.

If you just couldn’t get in to see someone before you are pregnant, it’s ok. Breathe and then call to get your questions answered within the first week if possible. Many medications are safe during pregnancy and suddenly stopping them can create a flare of your autoimmune disease. Ask the nurse in the office where you will be seen if they can check which meds to stop urgently until you can be seen at your appointment and continue all the others.

Step 2: Stick to the plan and modify the plan with your doctor when needed

Pregnancy is synonymous with change and transition. It is essential to stick to the plan of care regarding medications and treatments so that the outcome is optimal for mom and baby. In caring for pregnant women with autoimmune disease, I have come to realize that their disease can have variable responses to pregnancy. Some are destined to get worse, such as type 1 diabetes, due to the normal release of hormones by the placenta into the maternal bloodstream. This can make blood sugar control nearly impossible in some women leading to possible miscarriage, or preterm delivery despite the fetus not quite being ready for birth [5].

Some autoimmune disease can improve during pregnancy, such as rheumatoid arthritis, due to the natural suppression of the maternal immune system. It is believed this immune suppression of pregnancy occurs to prevent rejection of the growing fetus (who is separate from the mother in genetics since the fetus has half the DNA of their father which is foreign to the mother’s body). Women can experience a period of reduced autoimmune disease activity only to have a difficult rebound after the birth of the baby due to a resurgence of the mother’s immune system. Some of these women are robbed of the joy of their new baby because of the flare up of their disease with increasing pain, suffering and fatigue leading to difficulty in caring for a newborn or even themselves.

Step 3: Know the warning signs

Autoimmune disease creates inflammation and a hostile environment in women’s bodies. Many women who are pregnant with autoimmune disease can well despite this inflammation. Still, there are certain warning signs that might indicate a more urgent problem and need to be taken seriously. Organ dysfunction, such as when your heart or kidneys begin to fail, can occur suddenly and without prior warning. Some failures are also precipitated by a recent illness or dehydration.

Warning signs that your body is not tolerating dysfunction well:

Shortness of breath, especially if it lasts longer than 5 min or at rest
Swelling of hands and feet, especially if it is severe requiring removal of jewelry/clothing
Draining skin lesions or rashes
High fever >101 degrees F
Inability to move from bed without severe pain (joints, back, etc)
Chest pain/pressure
Fainting, loss of consciousness, inability to arouse from sleep
Difficulty speaking or not making coherent sentences, unequal smile (associated with low blood sugar or stroke)

Step 4: Have an emergency plan in place when warning signs occur

The best thing to do in the urgent situations above is to call or get help immediately. Driving yourself to the hospital can be dangerous for you and all the other innocent people on the road. DON’T DO IT! Find someone to drive you, or call 911 depending on how serious the situation is. For instance, draining skin lesions and severe swelling of hands and feet need to be addressed, but you can likely find a ride to the hospital in reasonable time (within 30-60 min), but chest pain/pressure or shortness of breath require emergency response services as you might require treatment prior to arrival at the hospital.

Delaying emergent or urgent treatment can lead to death or disability. If you or someone you know has any of these warning signs then don’t hesitate to call for help and get them seen. Women with autoimmune disease have an increased risk of death even when not pregnant. Death from autoimmune disease is one of the top 10 causes of death for women in the US and UK [6, 7].

Step 5: Breathe and find some joy in your pregnancy

The chronic stress of autoimmune disease and the acute changes of pregnancy can become exhausting to manage daily and hourly at times. Worrying will not change the outcome of the pregnancy. Anxiety itself can increase stress and difficulties (but don’t shame yourself for those feelings, just let them be!). So, once you have a medications/treatment plan, an emergency plan, and find a steady state for your pregnancy with an autoimmune disease, then start to enjoy the days as much as possible. Find something to savor such as a warm cup of mint tea, maybe something to make you laugh like an adorable onesie for your growing little one, or a friend or confidant with which to share your grateful moments. Motherhood is a journey and not one for the faint of heart.

References:

Orth, Teresa. The Essential Guide to Pregnancy and Autoimmune Disease: How to Stay Active, Deliver a Healthy Baby, and Minimize Flares. eBook 2018, print 2024 Tucson, AZ: Amazon. https://a.co/d/6NJSs53
https://www.smfm.org/members/what-is-a-mfm
https://www.aarda.org/diseaselist/
http://shriverreport.org/why-are-50-percent-of-pregnancies-in-the-us-unplanned-adrienne-d-bonham/
https://www.stanfordchildrens.org/en/topic/default?id=diabetes-and-pregnancy-90-P02444
https://www.aarda.org/news-information/statistics/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2951969/

Many people who become pregnant don’t expect to have complications. However, now more than ever before as our US population of pregnant people ages and comes into pregnancy with more medical conditions, complications of pregnancy have also become more prevalent and dangerous. Historically, preeclampsia developed in 2-8% of pregnancies and with higher risk conditions can develop in 25-75% of pregnancies. [1]

As a high risk pregnancy doctor, I see pregnant people and their families at their most vulnerable and sometimes riskiest moments of their lives. Preeclampsia is a pregnancy or recently-pregnant condition that threatens the life and abilities of those who develop it. Preeclampsia is diagnosed based on elevated blood pressure in pregnancy that develops after 20 weeks of gestation. [2] It can be associated with protein in the urine, decreased platelets, abnormal kidney function or failure, abnormal liver enzymes, seizures or brain damage, fluid in the lungs, and even cardiac disturbances. Rarely, in about 10% of cases, elevated blood pressure and preeclampsia develop in the postpartum period. [3] This happened to my sister about a week after she delivered and she nearly died from lung and kidney complications. Luckily, prompt treatment for her in the intensive care unit (ICU) allowed her to heal and survive. While death from preeclampsia is rare in the developed world, it is still one of the leading causes of death in our developing nations worldwide.

Pregnant people with some medical conditions like lupus, type 1 and type 2 diabetes, renal disease, hypertension or high blood pressure, and other autoimmune diseases are at increased risk of preeclampsia during and after pregnancy. [4] While there are some tests that have been used to stratify risks, there is no test that is 100% accurate in its prediction of who will develop preeclampsia. Therefore, prenatal care that is early and often is recommended for the monitoring of the development of complications like preeclampsia during and after pregnancy.

There has been promising research into risk reduction of developing preeclampsia in certain people who are at high risk for development of the disease. Research indicates that starting a low dose aspirin at 12 weeks of pregnancy and continuing to delivery can reduce the risk of developing preeclampsia by 10-15%. [5] Of note, we formerly called this “baby” aspirin, but we don’t give aspirin to actual babies due to the risk of developing Reye Syndrome [4], so we use low dose aspirin terminology now! Please DON’T give any babies aspirin directly. However, taking aspirin during pregnancy has never been associated with Reye syndrome in newborns so it is considered safe and helpful.

Prevention is always better than treatment when it comes to preeclampsia. Low dose aspirin itself does not lower your blood pressure or increase the risk of bleeding. Some people want to wait to take the aspirin until they “need it” or develop preeclampsia. Unfortunately, it is too late and often not helpful once preeclampsia has developed. Low dose aspirin is believed to help the placenta to grow more normally and avoid the development of preeclampsia in some pregnant people. In the US, we have 81 mg daily dosing of aspirin. The studies were conducted in Europe where standard low dose aspirin comes in 100-150 mg daily dosing. For this reason, some high risk pregnancy doctors will recommend taking 2 tabs of the 81 mg low dose aspirin in the US due to current available formulations. This is typically recommended for pregnant people who are at higher risk of preeclampsia or who have higher body mass index (BMI) over 30.

Once preeclampsia develops, then it is usually best to follow closely with your ob/gyn and/or high risk pregnancy doctor to see when delivery might be indicated. Preeclampsia remains one of the leading causes for indicated preterm birth in the US. [7] Delivery is the only known cure for preeclampsia. Magnesium sulfate is also used to prevent progression of preeclampsia into eclampsia which is when seizures occur. Postpartum preeclampsia is managed with seizure prevention and blood pressure control. Delivery might take time over days to weeks to resolve the preeclampsia completely. In addition, pregnant people with a history of preeclampsia are at increased risk of heart and cardiac complications later in life. [8]

Please listen to your body and your healthcare team to prevent and treat preeclampsia. Please also follow up on your long term health once you have had preeclampsia due to increased risk of cardiac complications, so you can continue to be present in the lives of your loved ones for decades to come.

Teresa Orth, MD, PhD

5 steps to prevent death in women with autoimmune disease who are pregnant

Preeclampsia-It’s Unpredictable and Life-Threatening