Monday, February 6, 2012

Lupus and pregnancy

Pregnancy is always a big worry when being diagnosed with lupus.   For those women that really want to have children, they must weigh their risks while thinking and or planning a pregnancy while surviving with SLE.  Discussing your health with your rheumatologist and seeing a high risk obstetrician can make having a baby a joyous time.  Many women with lupus go on to have healthy pregnancies and healthy babies.

Pregnancy and Lupus 

When Is The Best Time To Get Pregnant?

The answer is simple: when you are at your healthiest. Women in SLE remission have much less trouble than do women with active disease. Their babies do much better, and everyone worries less. Good health rules are essential: eat well, take medications as prescribed, visit your doctor(s) regularly, don't smoke, don't drink, and certainly don't use "recreational" drugs.

Frequent doctor visits are important in any high risk pregnancy because many conditions which may occur can be prevented, or treated more easily, if found early. About 20 percent of women with lupus will have a sudden increase in blood pressure, protein in the urine, or both during pregnancy. This is called toxemia of pregnancy (or pre-eclampsia, or pregnancy-induced hypertension). It is a serious condition that requires immediate treatment and often immediate delivery of the baby. Toxemia is more common in older women, in black women, in women with twins, in women with kidney disease, in women with high blood pressure, and in women who smoke.
Serum complement and blood platelet count may be abnormal in these cases. Since complement levels and blood platelet counts are also abnormal during SLE flares, it may be difficult for the doctor to be certain that a flare is not causing these symptoms. If toxemia is promptly treated the woman should be in no danger, but there is a high risk that the baby will die if it is not rapidly delivered. If toxemia is ignored, both the woman and her baby are in danger.
As pregnancy progresses it is often wise for the doctor to check the baby’s growth with sonograms (which are harmless). The doctor should also regularly check the baby’s heart beat. Abnormalities in either the baby’s growth or its heart beat may be the first signs of trouble that can be treated.
Can I Take Medications During Pregnancy?
It is always unwise to take unnecessary medications during pregnancy. However, necessary medications should not be discontinued. Most medications commonly taken by those with SLE are safe to use during pregnancy: prednisone, prednisolone, and probably methylprednisolone (Medrol) do not get through the placenta and are safe for the baby. But others, specifically dexamethasone (Decadrol, Hexadrol) and betamethasone (Celestone) do reach the baby and are used ONLY when it is necessary to treat the baby as well. For example, these medications might be used to help the lungs mature more rapidly if the baby will be premature. A small dose of aspirin is safe.  Most physicians now hold that azathioprine (Imuran) and hydroxychloroquine (Plaquenil) do not harm babies, but the final word is not yet in on these. Cyclophosphamide (Cytoxan) and methotrexate are definitely harmful if taken during pregnancy.
What About Prophylactic (Preventative) Treatment With Prednisone?
Doctors once felt that all pregnant women with lupus should take small doses of prednisone to prevent early abortion. This is generally not necessary. Similarly, physicians once felt that steroids should be given or increased after the baby is born to prevent "post-partum flare." Again, this is unnecessary in most cases. For women recently on steroids, however, a "stress" steroid is usually given during labor to supplement what the mother cannot make herself.
What Are Antiphospholipid Antibodies And Why Are They Important?
About 33 percent of women with lupus have antibodies that interfere with the function of the placenta. These antibodies are called antiphospholipid antibodies, the lupus anticoagulant, or anti-cardiolipin antibodies. These antibodies may cause blood clots, including blood clots in the placenta, that prevent the placenta from growing and functioning normally. This usually occurs during the second trimester. Since the placenta is the passageway for nourishment from the mother to the baby, this condition will slow the baby’s growth. However, the baby can be delivered at this time and will be normal if it has developed enough.
Treatments for pregnant women with lupus who have these antibodies are still being tested. Heparin in various forms is recommended. Some doctors add a small dose of (baby) aspirin. With the use of such medications, about 80 percent of the women will not miscarry.
Will My Baby Be Normal?
Premature birth is the greatest danger to the baby. Births before 36 weeks are considered premature.
  • About 50% of lupus pregnancies end before 40 weeks (9 months), usually because of the complications previously discussed.
  • Babies born after 30 weeks, or weighing more than 3 pounds, usually do well and grow normally.
  • Premature babies may have difficulty breathing, may develop jaundice, and may become anemic. In modern neonatal units, these problems can be easily treated.
  • Even babies as small as 1 pound, 4 ounces have survived and have been healthy in every way; but the outcome is uncertain for babies of this size.
  • There is one congenital abnormality that occurs only to babies of lupus mothers (neonatal lupus, described below).
  • There is no unusual frequency of mental retardation in babies of lupus mothers.
  • Will My Baby Have Lupus?
    About 33% of people with lupus have an antibody known as the anti-Ro, or anti-SSA, antibody. About 10% of women with anti-Ro antibodies-about 3% of all women with lupus-will have a baby with a syndrome known as "neonatal lupus."
    Neonatal lupus is not SLE. Neonatal lupus consists of a transient rash, transient blood count abnormalities and sometimes a special type of heart beat abnormality. If the heart beat abnormality occurs, which is very rare, it is treatable but it is permanent.
    Neonatal lupus is the only type of congenital abnormality found in children of mothers with lupus.
    For babies with neonatal lupus who do not have the heart problem, there is no trace of the disease by three-six months of age, and it does not recur. Most babies with the heart beat abnormality problem grow normally, but some need pacemakers. If a mother has had one child with neonatal lupus, there is about a 25 percent chance of having another child with the same problem. The chance that the child will develop systemic lupus erythematosus later in life is very, very low.
    Will I Have To Have A Caesarian Section?
    Very premature babies, babies showing signs of stress, babies of mothers with low platelets, and babies of mothers who are very ill are almost always delivered by Caesarian section. This is both the safest and fastest method of delivery in these cases. Usually the decision about type of delivery is not made in advance because the specific circumstances at the time of delivery are the determining factors.
    Can I Breast-Feed?
    Although breast feeding is possible for women with lupus, breast milk may not come if the baby is born very prematurely. Very premature babies are not strong enough to suckle, and thus cannot draw the milk. However, milk can be pumped from the breast to feed a premature baby if the mother wishes to do this. Plaquenil and the cytotoxic drugs (Cytoxan, Imuran) are passed through the milk to the baby. Some medications, such as prednisone, may prevent milk from being produced. Many drugs, including warfarin (Coumadin), heparin, and low doses of prednisone, are safe. If you are taking any medication it is best not to breast feed; but if your doctor approves, you may.
    Who Will Care For The Baby In The Case Of Active Lupus?

    Prospective parents often do not ask what will happen after the baby is born if the mother is ill and unable to care for the child. Since it is likely that a woman with lupus will have future periods of illness, it is wise to think of this possibility in advance and to have plans for alternate child care (spouse, grandparent, etc.) if needed.

    The Risks of Pregnancy for Women With Lupus 

    A woman with lupus can have a successful pregnancy, but there are some risks and possible complications.

    Lupus is a disease that most commonly affects women during their childbearing years. In the past, women with lupus were advised not to get pregnant because it was thought to be too dangerous for both mother and baby. Although pregnancy with lupus is still considered high risk, most women with lupus who want to have children will be able to have safe, successful pregnancies.
    How Does Lupus Affect Pregnancy?
    Lupus doesn't affect a woman's ability to get pregnant, but it does increase the risk of some pregnancy complications. "Although most pregnancies go well, there is an increased risk of miscarriage and premature birth. Women with lupus are at risk for renal [kidney] complications including renal failure if pregnancy occurs during a phase of active renal disease," notes Ignacio Sanz, MD, a rheumatologist at the University of Rochester Medical Center in Rochester, N.Y., and chair of the research committee for the Lupus Foundation of America. Here's what you need to know about the risks of pregnancy in different stages:
  • First Trimester. Miscarriage during the first trimester is sometimes associated with active lupus symptoms. About 10 percent of pregnancies in women with lupus end in miscarriage, while nearly 15 percent of all pregnancies in the United States result in miscarriage.
  • Second Trimester. Pregnancy complications in the second trimester may be due to a lupus antibody known as the antiphospholipid antibody. These antibodies are present in the blood of about 36 percent of women with lupus and are associated with the formation of blood clots that can cause miscarriage.
  • Late-term complications. Pre-term birth occurs in about 25 percent of lupus pregnancies. Women with lupus are also more likely to develop high blood pressure and retain body fluid during pregnancy, a condition called preeclampsia, which can cause the placenta to rupture.
Maternal Risks of a Lupus Pregnancy
"The main concern for women with lupus has always been that pregnancy will cause their lupus to flare up. We have learned that although many women do have a flare [during pregnancy], they are not as severe as we once feared," says Dr. Sanz. "However, this sense of safety only applies to pregnancies that occur when lupus has been well controlled for several months."

Flares occur in about 18 percent of pregnant women with lupus. They are likely due to increased estrogen production that takes place in the body during pregnancy, stimulating the immune system to react. Flares are more common in women who have kidney involvement with their lupus before or during the pregnancy.
Fetal Risks of Lupus
There are certain risks to the baby if the mother has lupus during her pregnancy. These include:
  • Small baby. Babies of mothers with lupus have a higher risk for a condition called intrauterine growth retardation (IUGR), meaning that the baby remains much smaller than is normal. IUGR occurs in about 15 percent of lupus pregnancies. IUGR may be more likely if the mother has preeclampsia, antiphospholipid antibody, or was treated with steroids during pregnancy.
  • Neonatal lupus. In rare cases, the baby can be born with lupus antibodies that cross the placenta. In 95 percent of these cases, the antibody is a type called anti-Ro. Even when the mother has anti-Ro antibody, neonatal lupus occurs in only about one percent of cases. Most of the symptoms of neonatal lupus are mild and go away in a few months, but there is one serious complication called congenital heart block. In these cases the baby does not have a normal heart rhythm and may need a pacemaker.
Managing Lupus During Pregnancy
"If we need to treat lupus during pregnancy we can still use many of the same drugs we used before pregnancy," says Sanz. Prednisone, Plaquenil (hydroxychloroquine), and the immunosuppressive drug Imuran (azathioprine) can all be used if needed to control lupus during pregnancy.

In women who have tested positive for antiphospholipid antibody, especially if they have a previous history of pregnancy complications, a combination of aspirin and the blood thinner heparin can be given to prevent blood clotting that can cause a second trimester miscarriage. [1]
How to Prepare for a Lupus Pregnancy
If you want to become pregnant with lupus, you should talk to your doctor first. "We advise women not to get pregnant if they have active lupus. This is especially important if the activity involves the kidneys or central nervous system. We would like to see their lupus in good control for about six months before they become pregnant," advises Sanz.

Once you get the okay to get pregnant, you should be tested for antiphospholipid and anti-Ro antibodies. The doctor who treats your lupus can recommend an obstetrician who has experience with high risk pregnancies. It is wise to be monitored by your treatment team once a month. Monitoring should include blood work and urine testing to detect any increase in lupus activity as early as possible.
In women who are at risk of transferring anti-Ro lupus antibodies to the baby or of having premature births, regular fetal heart monitoring and ultrasound exams of the fetus and the placenta should be done.
With proper timing and careful management, most women with lupus can have safe and successful pregnancies. Although a lupus pregnancy is still considered high risk, doctors know how to monitor for complications and how to treat complications when they develop. The days of counseling women with lupus not to get pregnant have passed.

Lupus and Pregnancy 

by Michelle Petri, M.D., M.P.H.
Because lupus is a disease that strikes predominantly young women in the reproductive years, pregnancy is both a practical and a research issue. For most women with lupus, a successful pregnancy is possible. This is an immense change from the 1970's, when most women with lupus were counseled not to become pregnant. Studies of the immune system in pregnancy are of interest for what they have taught us about the effect of hormones on lupus flares.
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Risk of Miscarriage
First, the risks of pregnancy in lupus patients are real and involve both the mother and the fetus. About ten percent of pregnancies currently end in miscarriage. The first trimester losses appear either to have no known cause or to associate with signs of active lupus. Later losses occur primarily due to the antiphospholipid antibody syndrome, inspite of treatment with heparin and aspirin. All women with lupus, even if they do not have a previous history of miscarriage, should be screened for antiphospholipid antibodies, both the lupus anticoagulant (the RVVT and sensitive PTT are the best screening battery) and anticardiolipin antibody.
The classification criteria for the antiphospholipid antibody syndrome were revised last year. There are now two major criteria--vascular thrombosis and pregnancy morbidity. A woman who has had a past venous or arterial thrombosis should be therapeutically anticoagulated during the next pregnancy. A woman who has pregnancy morbidity--one or more late losses, three or more first trimester losses, or severe pre-eclampsia or placental insufficiency--should be treated with prophylactic doses of heparin and a baby aspirin during the next pregnancy. Several clinical trials have indicated that the combination of heparin and aspirin is likely preferable to aspirin alone, although some women do have successful pregnancies on aspirin alone. These pregnancies should be considered high risk, with appropriate fetal monitoring, including ultrasounds to monitor growth and placental development, and biophysical profiles, usually from the 26th week onwards. Many of these babies can be rescued by early C-section when there are signs of severe placental insufficiency. There is no consensus on whether treatment is indicated for the woman with lupus who has antiphospholipid antibodies in her first pregnancy. Many authorities in the field would use a baby aspirin in this situation.
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Risk of Preterm Birth and Intrauterine Growth Retardation
An equal, if not more important risk is the risk of preterm birth. Preterm birth in lupus is usually not due to antiphospholipid antibodies, but due to pre-eclampsia and premature rupture of membranes. Risk factors for preterm birth in general include active lupus, high dose prednisone, and renal disease. Maternal hypertension in the second trimester is a good predictor. Overzealous treatment of maternal blood pressure could reduce placental blood flow, and is not recommended. We have not found any risk factors that predict premature rupture of membranes. In addition to being preterm, the baby is also at risk for intrauterine growth retardation (IUGR). We have not found a clinical variable that is predictive of IUGR. In fact, lupus activity, prednisone, and antiphospholipid antibodies are not predictive of IUGR. The best predictor using ultrasound monitoring is an abdominal circumference below the 10th percentile and an estimated fetal weight below the 50th percentile.
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Maternal Risks
The most important maternal risk, that of a lupus flare, is actually the most controversial. In prospective studies at both Hopkins and in London, the risk of flare is greater in a pregnant than a non-pregnant woman. However, other centers have not confirmed this. There may be differences in patient selection that account for the different findings. We have found that the hormone prolactin, which rises during pregnancy, is associated with lupus activity during pregnancy. Likely other hormonal influences, especially estrogen, changes in cytokines are involved as well, although these have not been studied. We have found that the type of organ system involvement is different in pregnant vs. non-pregnant patients. In pregnancy we have found an excess of renal and hematologic flares, and fewer arthritis flares.
Some of the risk to the mother is not directly due to lupus. In a case-control study we found that women with lupus were more likely to have multiple complications of pregnancy, including diabetes, urinary tract infections, and pre-eclampsia. For this reason, referral to a high-risk obstetrician is always appropriate. Women on prednisone were more likely to have hypertension and diabetes, as would be expected. The physician caring for a woman with lupus who wishes to become pregnant must review her medications. Prednisone is largely metabolized by the placenta, and is unlikely to cause any fetal malformations, but will increase the risk of diabetes and hypertension in the mother. Some immunosuppressives, such as imuran (azathioprine) have been continued during lupus pregnancy when necessary to control maternal lupus. Cyclophosphamide should never be used during pregnancy because of the high risk of important birth defects. Because of potential teratogenicity, Coumadin should be switched to heparin as soon as the woman knows she is pregnant. ACE-inhibitors, because of effects on fetal kidney development, should be stopped as soon as the woman knows she is pregnant. NSAIDs are usually allowed during the first trimester only, because of potential adverse effects on the fetal ductus arteriosus. Plaquenil (hydroxychloroquine) has a good safety record in lupus pregnancy, and is usually continued if needed to control maternal lupus.
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Management and Monitoring
Lupus pregnancy should be timed to coincide with a period of good disease control if at all possible. It does not make sense to taper medication simply because a woman desires pregnancy, because of the likelihood of inducing a flare if medications are reduced too low. General screening tests should include the antiphospholipid antibodies, and also anti-Ro and anti-La. A woman who is positive for these antibodies is at increased risk of congenital heart block in the baby, and monitoring of the fetal cardiac conduction system by 4-chamber fetal cardiac echo should be instituted. We generally monitor the mother monthly during pregnancy and obviously more often if disease activity warrants it. Laboratory monitoring done monthly includes the complete blood count, creatinine, liver function tests, urinalysis, and a 24 hour urine for creatinine clearance and total protein. It is controversial whether serologic tests are helpful during pregnancy. In normal pregnancy the C3 and C4 should rise.
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We are lucky to have a long-term collaboration between our high-risk obstetricians and the Lupus Center at Hopkins that has allowed not only for superb clinical care of the mothers and babies, but also for the prospective database that has led to the studies summarized above. For nearly all mothers, a happy outcome is possible, but we must not forget that we have had one maternal death in our 150 pregnancies and that 7% of the pregnancies are characterized by a severe maternal complication. This is our impetus to continue our research into lupus and its interactions with pregnancy.

Pregnancy and Family Planning

Many women with lupus do well during pregnancy, giving birth to full-term babies with no complications. While disease flares may be more frequent during pregnancy, they usually are mild. However, before a woman with lupus becomes pregnant, she should contact her doctor. Doing this can increase the chances of a healthy outcome for mother and child. Many women with lupus see a special "high-risk obstetrician" specializing in complicated pregnancies.
Do women with lupus have fertility problems?
Women with lupus are just as likely to get pregnant as other women their age. Advance planning is important, however, since certain lupus medicines are not good for a growing fetus to be exposed to. Many experts recommend trying to get pregnant after the lupus has been quiet (no flares) for at least six months.

Once a woman with lupus is pregnant, what is the likelihood of a problem?
A woman with lupus is more likely than women without the disease to have a miscarriage or develop high blood pressure (called pre-eclampsia) that can end a pregnancy. Also, in up to half of all lupus pregnancies, the baby is born before it is fully developed. This is called premature delivery. The baby usually can be treated for any problems caused by premature delivery, and most do well in the end.

Why is the risk of miscarriage higher in women with lupus?
About one-quarter to one-third of women with lupus have substances in their blood called antiphospholipid antibodies (aPL). These antibodies make it more likely that a miscarriage, or a blood clot (even when not pregnant) will occur. For these reasons, a woman with lupus should always be tested for these antibodies right away if she becomes pregnant, and may be started right away on a strong blood thinner called heparin. Taken throughout the pregnancy, this medicine and a baby aspirin (81 mg) make the blood less sticky and lower the risk of miscarriage.

Are babies of mothers with lupus healthy?
Usually, yes. They have no greater chance of a birth defect or mental retardation than do children born to women without lupus. However, a small number of babies—about 2 in every 100—born to women with specific antibodies in the blood (called anti-Ro or anti- SSA) have a condition called neonatal lupus. This involves either a blockage in the heart that makes it beat more slowly than it should, or a rash that usually disappears about six months later. All pregnant women with lupus should have a screening test for these antibodies.
A special picture of the growing baby's heart (a fetal echocardiogram) at about 14 weeks of pregnancy can show if the heart problem has developed. In about one in five babies with neonatal lupus, the heart problem causes death. Most do just fine, though, with a permanent pacemaker that keeps the heart beating regularly through infancy and into adulthood.

What is the best kind of birth control for a woman with lupus to use?
For a woman with lupus, the very personal choice of which birth control method to use is complicated by the fact that one of the main options—birth control pills (oral contraception)—usually contain female hormones that many experts long believed could trigger or worsen lupus. The experts are thinking differently about this now, so a woman with lupus should talk things over with her doctor. Birth control options that present the usual risks and benefits for people with lupus include barrier methods of contraception (condom, diaphragm, IUD).

Reviewer: H. Michael Belmont, M.D.
Spring 2006

The Latest on Lupus Research, Treatment and Pregnancy

By Jill Buyon, MD
Hospital for Special Surgery, New York, NY

Is it OK for women with lupus to become pregnant?
Most women with lupus do well during pregnancy, giving birth to full-term babies with no complications. It's best to be in remission for at least six months prior to getting pregnant. Although some physicians believe that lupus symptoms get worse during pregnancy, not all studies show this. Disease flares, even if they are more frequent, usually are mild. There are some risks, however, including premature birth and fast-developing high blood pressure (pre-eclampsia), so careful monitoring is key. In terms of lupus medicines, women should continue to take what they've been prescribed unless the doctor instructs them on specific changes.

Is the risk of miscarriage higher in women with lupus?
Women with lupus who test positive for antiphospholipid antibodies in their blood often are at increased risk for miscarriage, particularly in the second trimester. In some cases, especially if there have been previous miscarriages or blood clots, doctors recommend that a woman immediately start taking heparin or other blood thinners once she determines she is pregnant. This has been shown to notably increase the chances for a full-term birth.

Are babies of mothers with lupus healthy?
In most cases, the answer is yes. The babies have no greater chance of birth defect or mental retardation than do children born to women without lupus. Up to half of all lupus pregnancies result in premature birth of the infant, but most problems can be successfully treated and the baby usually does well in the end. Also, a small percentage—about 2 percent—of babies will have a condition called neonatal lupus. This consists of either a permanent heart blockage in which the heart beats abnormally slowly, or a rash that usually disappears by the time the baby is 6 months old. In about one in five cases, heart problems in babies with neonatal lupus cause death. Most babies do well, however, although they need a pacemaker for life.

What are the primary areas of research in lupus?
With no major new treatment approved in more than 40 years, lupus needs a breakthrough. Researchers have made significant headway over the past few years, reporting new findings on how and why the disease develops and what can be done about it. Among the advances are a deeper understanding of how the disease is sometimes passed on through generations and better understanding of how lupus attacks the brain, heart, kidneys, and skin.

Are companies developing new drugs to treat lupus?
Yes, finally. Several pharmaceutical companies are developing new medications. An online search will generate information on these companies and their drugs. You also can find websites that report new drug findings, such as and

How can I help advance research and drug development?
As a person with lupus, you can directly help in advancing lupus science—and at the same time help yourself—by participating in a research project called a clinical trial. These trials evaluate the safety and effectiveness of medical treatments, drugs, or devices in human beings. The Food and Drug Administration (FDA) requires that such trials be performed before a product is prescribed to patients. Try visiting the following websites:; ; .

What is the outlook for people with lupus?
There isn't a cure yet, but every year researchers get better insights into lupus and come closer to uncovering more specific and less toxic treatments. In 1955, only 50 percent of people newly diagnosed with lupus were expected to live more than four years. By 1969, that figure for 50 percent survival extended past four years to10 years. Now most people with lupus can look forward to a normal lifespan.


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