Rheumatic Disease & Pregnancy

The good news is that you can have a very healthy, normal pregnancy with a rheumatic disease. You can have a normal delivery and a healthy, active, happy baby. You can nurse and care for your baby just like any other parent does, and adapt every task to your needs and physical condition.

Every day, moms and dads with rheumatic diseases like RA, PsA, AS and lupus start their own families. These diseases do not need to limit you when it comes to conceiving, having a healthy pregnancy and raising your kids.

Keep these tips in mind as you plan to start your family:

Work with your rheumatologist, ob/gyn and other physicians on your healthcare team to talk through any problems or concerns, or to find the treatments that work best for you.

Plan ahead for pregnancy if you can. Talk to your rheumatologist before you try to conceive. Use birth control until your rheumatologist gives you the all-clear sign to begin trying to get pregnant.

Let your rheumatologist know as soon as you confirm your or your partner’s pregnancy. If tests need to be done, it’s good to notify your doctor as soon as possible.

Ask for help when you need it. Let your family and friends know ahead of time that you may need to call on them for help with tasks like driving or carrying, or feeding, diapering or bathing your baby. Keep contact info for your “support network” programmed into your phone. If you can, arrange for a home health aide for the first few weeks after delivery.

Get support from other parents with rheumatic diseases. Check out support groups in your community. Ask questions. Get tips from other parents. Share your experiences with them too.

Enjoy this special time! If you have any questions or concerns about how to ensure a healthy, safe pregnancy and baby, talk to your physicians. Remember to relax and enjoy being a new parent. Let everyone else make a fuss over you just a little bit. Enjoy creating your baby’s nursery or a web page about your new baby for family and friends to visit.

How does pregnancy affect women with rheumatic diseases?

And how can having those diseases complicate pregnancy for some women? One important factor is disease activity. Disease activity can change during pregnancy in some cases, and it can also increase your risk of pregnancy complications.

If you have an autoimmune rheumatic disease like RA or others, you already know about disease activity. This term describes your levels of inflammation, and the effects of high inflammation on your body: joint pain or swelling, inflamed skin or eyes, impaired mobility, severe fatigue, nausea and other symptoms.

During pregnancy, you will work with your doctors to use medications that are compatible with pregnancy to control disease activity and lower your inflammation. Keeping your disease activity under control helps you manage your symptoms and prevent long-term damage to joints, tissues and organs.

Pregnancy can trigger short-term changes to your immune system. This is a natural effect of pregnancy, and helps the fetus grow and develop. For some women, these immune system changes can lower their disease activity during pregnancy. They experience an improvement in their symptoms, and have less pain or fatigue that they did prior to pregnancy. However, there are many women who do not. The most recent studies show that about half of women with RA, for example, improve during pregnancy while half continue to have active disease.

Telling the difference between pregnancy and fares

When you are pregnant, you may feel symptoms that are pretty similar to those of your rheumatic disease:

  • Low back pain
  • Fatigue
  • Nausea
  • Swollen ankles, feet or hands

At your medical appointments during your pregnancy, your rheumatologist and ob/gyn can keep track of your symptoms, and assess whether they are due to your rheumatic disease or symptoms of being pregnant. You can work with your doctors to treat your symptoms.

Here is a good guide: If your symptoms feel similar to your typical fare, then they probably are from your rheumatic disease. If they feel different from your usual symptoms, then it’s more likely that they are due to pregnancy.

Pregnancy may affect different rheumatic diseases in unique ways. Depending on your specific condition and how well controlled your disease is at the time you conceive, you may be at risk for certain complications. On the other hand, pregnancy might make your symptoms lessen temporarily.

This information is part of CreakyJoints’ guide to family planning. Learn about medications to avoid while pregnant and more. Download your copy of Raising the Voice of Patients: A Patient’s Guide to Family Planning with Rheumatic Diseases.

Rheumatoid Arthritis and Pregnancy

Pain and fatigue from rheumatoid arthritis may make women worry how bad they’ll feel when they’re pregnant. However, many women (about half) with RA actually experience lowered disease activity during pregnancy. There is evidence that this varies depending on the patient, but symptoms like pain or fatigue may noticeably improve starting in the first trimester all the way through their delivery. Some pregnant women with RA even see their disease go into remission during this time. Why? During pregnancy, fetal DNA cells circulate through the mother’s system also. These fetal DNA cells increase throughout the pregnancy, and as they do, RA disease activity often goes down. As a result, some moms with RA feel better while they’re pregnant.

After delivery, however, RA disease activity most often comes back. New mothers often experience disease fares. Symptoms like pain and fatigue can return after you have your baby.

Please note that many people share the false information that women go into remission during pregnancy. The expectations of both patient and physician that RA will go into remission during pregnancy may lead to undertreatment based on unfounded optimism.

As a result, you may have debilitating symptoms just as your newborn baby needs a lot of care. Talk to your rheumatologist about treatment options and getting back on medications BEFORE your RA fares. You may be able to start taking RA medications just a few weeks after your delivery to get your disease activity under control. Many medications for RA are safe with breastfeeding, so your rheumatologist can prescribe treatments that are safe to use as you nurse your baby.

Please note that all people are different and because some women experienced a reduction in symptoms doesn’t mean that you will too.

Psoriatic Arthritis and Pregnancy

There is much less data about how psoriatic arthritis changes in pregnancy, but most women don’t see a big change in arthritis activity during pregnancy or after pregnancy. A recent study of 42 PsA pregnancies found that 58.5% of patients noted improved or low disease activity, while 31.7% had worsening or ongoing high disease activity during pregnancy.

Psoriasis, on the other- hand, may improve in some women and worsen after delivery.

Risks of PsA during pregnancy may be due to how well the mother’s disease activity is controlled. When disease activity is high, your immune system produces an excessive amount of inflammatory agents called cytokines. High levels of cytokines in the blood can affect the baby’s growth in the uterus, and lead to low birth weight. So it’s a good idea to work with your rheumatologist to lower your disease activity before you try to conceive, and keep it under control while you are pregnant.

Ankylosing Spondylitis and Pregnancy

There is limited data about how ankylosing spondylitis changes in pregnancy, but most women have symptoms in pregnancy that are fairly similar to their symptoms before pregnancy. So if you have low back pain or other problems, you’ll probably still have these when you’re pregnant. Talk with your rheumatologist about ways to treat symptoms like back pain or inflamed bowels during your pregnancy.

Moms with AS are probably just as likely as any other women to carry their babies to full term, and give birth to healthy babies. However, AS may cause problems for women after delivery as they try to care for their newborn baby. Around 65% of women with AS in one study had trouble with physical tasks related to caring for their newborn because of their symptoms: lifting, carrying or bathing, for example. This is not just a problem for women with AS, but is common for all women with arthritis of any kind.

Women with AS whose disease activity is not well controlled when they conceive often experience aggravated symptoms during their pregnancy, and strong fares after delivery. In one study, 60% of women had a fare within six months of giving birth. Women with AS whose disease is not well controlled may have severe lower back pain or stiffness. This could make delivery more difficult in some cases. It may be harder for you to keep your legs open during a long labor. Severe spine stiffness may affect your ability to have an epidural, which numbs the lower body during labor. Talk to your doctor about how to manage your pain or stiffness during labor.

Because AS is caused by the HLA-B27 gene, your baby may inherit the gene too. This doesn’t mean that your child will grow up to develop active AS, but he or she may be susceptible to it. Couples can have genetic testing and counseling prior to conception to learn more about the risk of their baby developing AS, and what signs to watch for as the baby grows up.

Systemic Lupus Erythematosus (SLE or lupus) and Pregnancy

Lupus most often affects young women who are in their childbearing years. Decades ago, women with lupus were once advised to avoid pregnancy. Now, effective treatments allow women with lupus to better control their disease activity and have safe, healthy pregnancies. Women with lupus are more likely to have a fare during pregnancy, experience pregnancy loss or preterm birth, or experience other complications if they have any of these health problems: pre-existing or current hypertension (high blood pressure), history or current kidney disease, history of preeclampsia during pregnancy, history of blood clots or low blood platelets, or antiphospholipid antibodies.

In addition to your rheumatologist, you will likely need to see a maternal-fetal specialist during your pregnancy. This is an obstetrician who specializes in managing high-risk pregnancies. Women with lupus need to follow their doctors’ instructions carefully, watch for any signs of health problems or pregnancy complications, get enough rest and exercise, eat a healthy diet, and take any prescribed medications as directed.

You’ll need to get regular tests like these during your pregnancy to check for possible complications:

  • Urinalysis
  • Complete blood count (CBC)
  • Kidney and liver function tests
  • Antiphospholipid antibody tests
  • Anti-SSA/Ro and anti-SSB-La antibody tests
  • Anti-DNA antibody tests
  • Complement tests (C3 and C4)
  • Fetal ultrasounds

Pregnant women with lupus should see their rheumatologist about once every trimester, although your doctor may recommend more frequent appointments. If you have a flare during pregnancy, you may need to see your rheumatologist more often.

Controlling lupus during pregnancy, and avoiding fares, is the best way to have a safe pregnancy and healthy baby. Your rheumatologist can prescribe treatments like hydroxychloroquine (Plaquenil), azathioprine (Imuran), or prednisone during pregnancy to control your lupus.

Women with lupus are more likely to have a preterm delivery, meaning the baby is born more than three weeks before the due date. In some cases, the baby is born a month early and is very healthy, but perhaps a bit small. In other cases, the baby is born several months early and is in the hospital for many weeks and can suffer life-long complications. Very active lupus, particularly in the kidneys, is the most common cause for a very early delivery.

Unfortunately, women with lupus are at increased risk for miscarriages and stillbirths. Previous miscarriages and/or high levels of antiphospholipid antibodies are the most worrisome risk factors for this outcome. Women who have active lupus nephritis (lupus that involves the kidneys) at the time they conceived, or women who test positive for high protein levels in the urine, antiphospholipid antibodies or lupus anticoagulant; or have hypertension or high serum creatinine levels during pregnancy may also be at higher risk for losing their baby.

Lupus can increase the risk of certain serious pregnancy complications. That’s why regular visits with your maternal-fetal specialist for blood and urine tests are so important. These complications include:

  • Preeclampsia, or pregnancy-induced hypertension: This used to be called toxemia, and is caused by problems with the baby’s placenta. The placenta is an organ attached to the uterine wall and connected by the umbilical cord to the fetus that allows for the flow of blood, oxygen, and nutrients. Preeclampsia occurs after 20 weeks, and causes sudden high blood pressure, high levels of protein in your urine, and can cause severe headaches, blurred vision, and seizures. Preeclampsia is a serious complication that could arm you and your baby, so it requires emergency medical treatment. Your doctors are looking for early signs of preeclampsia when they check your urine and blood pressure at every visit.
  • HELLP syndrome, which stands for hemolysis, elevated liver enzymes and low platelets: This is a somewhat rare syndrome, but can occur in 10% to 20% of women with preeclampsia.
  • Intrauterine growth restriction: This can cause your baby to be very small and may be due to hypertension, antiphospholipid antibodies or high lupus disease activity, especially if you have kidney involvement.
  • Kidney problems: Active lupus can cause reduced kidney function. Extra protein can seep into your urine. This can cause swollen feet, legs or ankles. Pregnant women may think swollen ankles are normal, but if you have lupus, it could be due to impaired kidney function.

Once again, most women with well-controlled lupus can have safe, healthy pregnancies, and give birth to healthy children with no development problems. It’s important to see your rheumatologist and maternal-fetal specialist regularly, notify them about any possible problems or signs of complications, and take medications as they direct to control fares.

Neonatal lupus: Rarely, women with lupus could have a baby with neonatal lupus. Neonatal lupus is NOT the same as SLE; babies born with neonatal lupus are very unlikely to develop chronic lupus later in life. Neonatal lupus is caused by a reaction in the infant to the mother’s anti-SSA/Ro antibodies. About 10% of babies will be born with a skin rash that will go away on its own over the first few months of life and won’t come back. Occasionally, the infant might have abnormal liver tests or low blood cell counts, but this is also temporary and babies do not need to be specifically tested for these blood tests at birth.

In about 1-2% of cases, fetuses exposed to anti-Ro antibodies will develop a congenital heart block, which slows the heartbeat and requires a pacemaker. This happens before the baby is born. Once a baby is born with a normal heart rhythm, there is not a risk of developing this condition.

Antiphospholipid Syndrome (APS) and Pregnancy

Antiphospholipid antibodies could put you at risk for serious blood clots that could cause miscarriage if you do get pregnant. Your rheumatologist can test you for antiphospholipid antibodies. If your test is positive, your rheumatologist can counsel you about how your results affect your chances of getting pregnant or carrying a baby to term.

Antiphospholipid antibody syndrome (APS) is an autoimmune disease that can cause blood clots and pregnancy loss. Sometimes women with APS have other rheumatic diseases, usually lupus, but most women with APS do not have another rheumatic disease.

In APS, the high levels of these antibodies hinder normal, healthy blood flow. Blood clots can block arteries and veins, restricting healthy blood flow to the fetus as it develops in the uterus. This can lead to miscarriage or stillbirth.

If you have APS, you may need to take anticoagulants (blood thinners) to maintain healthy blood flow. Injections of heparin or low-molecular weight heparin, blood thinners, and a daily tablet of low-dose aspirin, have been shown to greatly improve the chances of having a successful pregnancy. Blood tests can show high levels of antiphospholipid antibodies that may require treatment during pregnancy. Your rheumatologist will work with you to pick the treatment plan best for you.

If you have APS and want to get pregnant, talk to your rheumatologist and ob/gyn before trying to conceive. You and your doctors can assess your health and risk of blood clots, and come up with a plan to prevent clots during your pregnancy. There are effective treatments to manage APS during pregnancy so you can greatly lower the risk of complications.

Stress and Pregnancy

People with chronic diseases like arthritis often have high levels of stress, anxiety or even depression. It’s stressful to deal with an ongoing illness that can cause severe symptoms, and requires regularly taking treatments that may have unpleasant side effects. People with rheumatic diseases often have to juggle doctor appointments, injections and pills, and insurance approvals for treatments.

Stress from your chronic disease can affect your overall health. It can affect your sleep and energy levels. While it is tempting to relieve stress in unhealthy ways, like smoking, drinking too much alcohol, taking drugs or overeating, all of these habits are especially risky during pregnancy. Pregnant moms are strongly advised not to smoke or drink alcohol. Obesity can also increase the risk of pregnancy complications like gestational diabetes.

If you find it hard to control your stress or anxiety due to your rheumatic disease, talk to your rheumatologist. Counseling or other mental-health treatment may help you get your stress under control. If you smoke, regularly drink alcohol, take any recreational drugs or overeat as a way to deal with the stress from your disease, you should get help before you get pregnant if possible.

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