OK im pregnant and i have Lupus?

Question

Ok i am 13 weeks and 5 days pregnant with my first child. I was diagnosed with Lupus when i was 10 years old. I have to go to the Lupus center at Magee Womens Hospital because i am pregnant. I want to know what to exspect at the appoinment. What will they do? And is there any complication when you have lupus and are pregnant? All answers are greatly appreciated!

Answer 1

Lupus and Pregnancy

A woman who has lupus can have a child, though lupus pregnancies are never easy. However, due to early diagnosis, improved prognosis, and changed attitudes, pregnancies in women with systemic lupus erythematosus (SLE), which were once rare, are now commonplace.



Because doctors used to counsel all pregnant women with SLE to undergo therapeutic abortion, the information about lupus and pregnancy available to patients, their families, and their physicians until recently was very limited. Several new studies now provide some answers. This article lists the most commonly asked questions of lupus patients considering pregnancy and answers them citing results of the newest studies.



Will I Be Able To Conceive?

Fertility (the ability to become pregnant) is normal for most lupus patients. Pregnancy is not likely to occur the first time a patient with lupus has unprotected intercourse, however. It often takes healthy couples up to a year of trying to become pregnant.



Even severe illness usually does not make women sterile, but some of the drugs used to treat lupus – cyclophosphamide (Cytoxan) is the most well known – do reduce fertility. High doses of prednisone often stop a woman's menstrual periods, but patients taking this drug can become pregnant. Thus, unless a woman has been specifically tested and found to be infertile, she should use contraceptives if she wants to avoid pregnancy.



Does Lupus Flare During Pregnancy?

Although textbooks used to say that pregnancy is dangerous for all patients with SLE, since few lupus patients had been allowed to carry their pregnancies, the warning was based on very little solid information. Beginning in the 1980s, several groups of physicians re-examined the issue of lupus and pregnancy, and some things are now clearly understood. First, many lupus patients have no trouble at all with pregnancy. Second, some changes that happen to pregnant women appear to be a flare of lupus but, in fact, are common pregnancy complications not related to lupus. Third, some lupus patients do flare during pregnancy. Whether the number of flares is greater than might be seen if the women were not pregnant is a point about which physicians disagree.



One of the problems of deciding whether flares occur more often in pregnant patients with SLE is that doctors aren't very clear about how often flares usually occur in women who are not pregnant. When doctors compare pregnant lupus patients with lupus patients that are not pregnant, and all factors are considered – age, race, duration of illness, and type and severity of illness – it appears that pregnant women develop flares about as often as do women who are not pregnant. However, when lupus patients' flare rates the year of their pregnancy and the preceding year are compared, studies suggest that flare rates for individual women are higher during pregnancy. Women who have quiet disease at the beginning of pregnancy may be protected from flare during pregnancy.



Although it is hard to understand why these apparently contradictory opinions exist, it turns out that such simple factors as when, why, and how a woman is identified for a study explain the different results. Some studies, which enroll women because they have symptoms of lupus during pregnancy, find a high flare rate during pregnancy. This study usually comes from a pregnancy clinic in which obstetricians call the rheumatologist conducting the study to tell him or her that a new pregnant lupus patient has been identified. Other studies enroll women who are considering pregnancy. In this case, the rheumatologist usually calls the obstetrician conducting the study to inform him or her that a known patient has become pregnant. This type of study most often finds a low flare rate. In neither case are the patients representative of all lupus patients. The women considering pregnancy have often chosen the time for pregnancy during a period when they are well; and the women with symptoms might not have been identified had they been in complete remission. Unfortunately, there is not yet a clear answer to the question of whether or not the risk of flare is increased by pregnancy.



Although doctors do not agree about the flare risk, they do agree that serious flares are uncommon during pregnancy, that flares in pregnant women can be treated, and that in most cases, pregnancies in those with lupus can continue, even if a flare occurs.



Treatment of the pregnant lupus patient is usually determined by the mother's health and is similar to treatment of patients who are not pregnant. There is no need to treat the mother prophylactically – that is, when she is well – to prevent a flare.



If I Am Pregnant, Will Flares Be Difficult To Identify?

Identifying a flare in a pregnant woman is sometimes difficult because normal effects of pregnancy may look like flares, and because some ways of diagnosing flares are changed by pregnancy. For instance, a decrease in platelet count or an increase in urine protein, both of which indicate a flare in a lupus patient, can occur in any healthy pregnant woman. Even with special tests, the doctors may not be able to tell whether the findings also indicate that lupus is worsening. On the other hand, a high erythrocyte sedimentation rate (ESR, sed rate), which indicates active SLE, is normal in any pregnancy. Thus, doctors have different rules to judge disease activity in a pregnant lupus patient than they do in someone who is not pregnant.



What Drugs Can I Take During Pregnancy?

It is best, if possible, to take no drugs during pregnancy, but active lupus is worse for the baby than are some commonly used lupus drugs. In no case should the mother's lupus be allowed to worsen during pregnancy simply to reduce the amount of the drugs she takes.



Among drugs used for lupus, aspirin and prednisone are both considered safe to take during pregnancy. There is a debate about the safety of hydroxychloroquine (Plaquenil) and azathioprine (Imuran). No major effects on newborns have been reported, but there has not been much experience with the use of these drugs.



Cyclophosphamide (Cytoxan) causes fetal malformations and miscarriages; it should not be used during pregnancy. Corticosteroid preparations other than prednisone may affect the baby and should not be used. The nonsteroidal anti-inflammatory drugs (NSAIDs) may be safe, but they have not been studied well. I advise not using them.



Will My Kidney Disease Worsen During Pregancy?

About one-half of lupus patients have some degree of kidney disease. The worse it is, the more likely it is that there will be problems during pregnancy. The most common problem that occurs in women with kidney disease is a complication of pregnancy called toxemia, or pre-eclampsia. In this condition, the blood pressure rises, protein is excreted in the urine, and fluid collects in the legs and elsewhere. The most effective treatment is for doctors to deliver the baby as soon as possible, even if the baby is premature.



Although women with very severe kidney disease – even those who require dialysis – can carry a pregnancy, the risks to both the baby and the mother are very high. As a general rule, if a woman's blood pressure before pregnancy is high enough to need strong medications to keep it normal, or if the kidney function measured by creatinine clearance is more than 25 percent less than normal, pregnancy will likely be a problem.



If a woman with any type of kidney problem gets pregnant, she should be closely monitored throughout her pregnancy by her nephrologist, rheumatologist and obstetrician.



How Will I Be Monitored During My Pregnancy?

There are two types of monitoring, one for the mother and one for the unborn child. For the mother, monthly visits (sometimes more frequent visits) to check for new symptoms and to check urine and blood for signs of lupus activity are often required. The most important factors to watch are the red blood cell count, platelet count and urine protein. At the beginning of pregnancy, all standard lupus tests are conducted, and antiphospholipid antibody and anti-Ro/SSA and anti-La/SSB antibody levels are determined in order to ensure that the mother is healthy, and so doctors can watch for changes during the pregnancy.



The fetus is usually checked with an ultrasound test at the beginning of pregnancy, and its growth is monitored by either palpation (feeling the abdomen to determine how big the uterus has become) or by repeated ultrasound tests. In women with anti-Ro/SSA and anti-La/SSB antibodies, an ultrasound test or a fetal electrocardiogram (done from outside the mother's abdomen) may also be used to examine for normality of the heartbeat. At approximately twenty-five weeks (six months), especially in women with antiphospholipid antibody or with active SLE, a series of tests for the baby's general health begin. None of these tests are invasive, nor are they painful or dangerous to the mother or the baby. Depending on the situation, they might be done one time only, or they might be done weekly or daily.



SLE itself does not mandate the need for an amniocentesis to be performed (taking a small amount of amniotic fluid through a needle to determine the health of the baby) but amniocentesis might be done for other reasons. If the mother is over the age of thirty-five, for example, an amniocentesis may be performed. Late in pregnancy, if early delivery is likely, amniocentesis might be done to determine if the baby's lungs have matured.



Are There Any Risks To The Baby?

There are several risks involved in having a baby when you have lupus, but if the disease is monitored closely during the pregnancy, it is quite likely that your baby will be born healthy. There are no specific genetic risks for the child of a woman with SLE. The frequency of Down's syndrome or other malformations is not higher than in the general population. The major risk to the baby is that it will die before it is born (miscarriage). This risk occurs primarily in mothers whose blood contains antiphospholipid antibody.



There are specific concerns that prospective mothers may have about the effects of their lupus on their unborn child.



Will My Baby Be Born Prematurely?

Premature birth is a risk when the mother has antiphospholipid antibody, when she is very ill, or when the mother develops toxemia. Premature babies have a higher risk of brain damage than do babies born at term. Generally, babies born weighing more than 3 pounds 5 ounces have few problems, though babies weighing less than 2 pounds 3 ounces are at high risk. However, I have seen babies born at 1 pound 7 ounces grow to be perfectly normal. Different clinics report different rates of prematurity. Although prematurity rates as high as 50 percent have been reported, most babies weighing more than 3 pounds 5 ounces at birth do well.



Will My Lupus Affect My Baby's Intellectual Development?

In the first few months of life, the growth and development of babies born to mothers with SLE seem normal, taking into account that many of them have been born prematurely. There is very little information available about babies beyond the toddler stage. We have re-examined children between five and eight years old. By and large they are doing well in school – some extremely well – and they look like any average group of children of this age. Early fears that there would be a high frequency of brain injury in children born to mothers with lupus do not appear to be justified, but questions about a frequency of mild reading disorders are not yet fully answered.



What is Neonatal Lupus And Will My Child Be More Likely To Have It?

Approximately one-third of women with SLE have anti-Ro/SSA and / or anti-La/SSB antibodies. The children of these women can develop a condition known as neonatal lupus.



Neonatal lupus is not SLE and does not turn into SLE. It consists mostly of a rash, often brought about by sun exposure, that lasts a few weeks and then disappears leaving no trace. Babies sometimes have abnormalities of their blood counts that usually need no treatment, since the counts return to normal spontaneously.



A rare manifestation of neonatal lupus, called heart block, is more serious. In this condition, the baby develops a very slow heartbeat and sometimes needs a pacemaker after birth. This problem can usually be identified by fetal electrocardiograms or echocardiograms performed between the eighteenth and twenty-fifth weeks of pregnancy. But even if identified, the slow heartbeat cannot be readily treated before birth. The baby's general health is monitored throughout the rest of the pregnancy, and he or she generally will be delivered if in trouble. Fewer than one percent of all lupus patients, and fewer than 3 percent of all women with antibodies to both Ro/SSA and La/SSB antigens, deliver babies with this problem. Babies of mothers who have antibodies to neither or to only one of the antigens are not at risk for this heart problem.



Will My Baby Develop Lupus?

The risk that the baby of a mother with lupus will develop lupus is the same as the risk that the mother's brothers or sisters or parents will develop lupus. Most doctors think this risk is about one percent. Since the neonatal lupus syndrome has been only recently identified, follow-up studies of children who have had neonatal lupus is quite sparse, but there have been no specific early warnings that these children are any more susceptible to develop adult lupus than are children who have not had neonatal lupus.



What Is Antiphospholipid Antibody, And How Does It Affect Pregnancy?

Antiphospholipid antibodies attack phospholipids, which are components of cell membranes. There are several different types of antiphospholipid antibodies, including the anticardiolipin antibody and the lupus anticoagulant. Anticardiolipin antibody was the first antiphospholipid antibody described, so the term was once used to describe all antiphospholipid antibodies; however, antibodies can be found against many other phospholipids, so the general term antiphospholipid antibody is now preferred. Some lupus patients have an abnormality in a common blood clotting test that is often used before surgery, but their coagulation (blood clotting) is normal. This abnormality is due to an antiphospholipid antibody called the lupus anticoagulant. Pregnant patients who have the antiphospholipid antibody – about one-third of lupus patients – may miscarry between the fourth and seventh months. The miscarriages seem to be caused by excessive blood clotting in the placenta. Many patients who have antiphospholipid antibodies do not actually have lupus as we now diagnose it. Doctors use the term primary antiphospholipid antibody syndrome (PAPS) to describe those patients who have the antibody but do not have SLE. Antiphospholipid antibodies are not related to any other autoantibody (antibodies against components of one's own body) that lupus patients have.



Not all pregnant patients with antiphospholipid antibody miscarry. In general, a woman who has previously been able to carry a pregnancy to term will carry future pregnancies to term without treatment. Women who have lost at least two pregnancies are those for whom treatment is recommended. There is a controversy about whether women who are pregnant for the first time or who have lost only one pregnancy should be treated.



Most doctors now treat pregnant women who have had prior unsuccessful pregnancies with aspirin and / or heparin to prevent blood clotting in the placenta. High dose prednisone therapy (more than 30mg per day) was also used previously, but new data indicate that the risk to the mother with this therapy may outweigh the benefits. Some doctors prescribe low doses of prednisone, and there are a variety of experimental types of therapy. Large-scale studies now being planned will soon provide more definitive answers regarding the best treatment.



If My Mate Has Lupus Will It Affect The Baby?

There have been no large-scale studies of children of fathers with lupus, but most studies of men with lupus have noted that they are normally fertile, and that their babies have been normal.



If I Get Pregnant, Will I Have To Have A Cesarean Section To Deliver?

Lupus patients do not universally have to deliver by cesarean section. The need to do this is dictated by specific obstetrical considerations that involve either the baby's or the mother's health that the time of delivery. However, since in many cases the mother or the child is ill, lupus patients are more likely to need a cesarean section for delivery than are normal women who do not have lupus.



Can I Breast-feed My Baby?

There is very little direct information available about lupus and breast-feeding. Many mothers have done so with no apparent harm to themselves or to their infants. It is, however, difficult to breast-feed premature infants, and women taking prednisone often do not produce breast milk. Many drugs taken by the mother pass through the breast milk to the baby, so a mother taking drugs should talk to her doctor before starting breast-feeding.



Can A Woman With Lupus Take Birth Control Pills?

Several medical articles published in the late 1970s and early 1980s suggested that birth control pills cause lupus to flare; thus most physicians told their patients not to take oral contraceptives. It is now believed that the extreme caution of the 1970s was excessive, though no new studies have been done. But many lupus patients do take birth control pills now with no apparent side effects. Nonetheless, extreme caution with birth control pills is recommended. Since one of the possible complications of anyone's use of birth control pills is increased blood clotting that leads to phlebitis and stroke – similar to what occurs in antiphospholipid antibody syndrome – women with the antiphospholipid antibody should not take oral contraceptives.



Condoms, diaphragms, most spermicidal jellies and intrauterine devices are generally safe for lupus patients. There is no information about the effect of the implantable contraceptive (Norplant) on lupus patients.



Is It Dangerous For A Woman With Lupus To Have An Abortion?

There are no special risks for termination of pregnancy in women with SLE, other than those associated with medical procedure. There is no experience with the “morning-after” pill (RU-486) in women with lupus.



What Recourses Do I Have If I Want To Have Children But Am Unable?

Generally, lupus does not affect one's fertility, though some drugs used to treat the disease may reduce one's fertility. For infertile women who are having difficulties getting pregnant, a variety of techniques are available to help. In some women, hormones are given to induce eggs to develop and be released. In others, extra hormones are given early in pregnancy. Hormone treatment is especially common in GIFT and ZIFT (Gamete or Zygote-Intra-Fallopian Tube Transplant) pregnancies in which an egg is fertilized outside the body and then placed into the womb. The lupus patient who does not produce eggs can be artificially inseminated with another woman's egg fertilized by her husband's sperm.



If a lupus patient can produce eggs but is too ill to support a pregnancy, she can consider a surrogate pregnancy, in which her fertilized egg is implanted into the womb of another woman (a surrogate), who will carry the baby to term and deliver it. There are not systematic studies of such pregnancies in women with lupus, but carefully selected patients have undergone these procedures successfully. Adoption is another option for those having problems conceiving. However, several, even those in full remission for more than a decade, have faced severe, insensitive, and cruel opposition from adoption agencies.



All physicians who see lupus patients know several who have normal grown children. There has never been a systematic follow-up of a large number of children of lupus mothers, though alarms have been raised from time to time about their growth and intellectual development. In our own studies we are now looking at the now school-aged children born of lupus mothers. Preliminary results suggest that when matched for birth weight they look pretty much like other children, and they are doing well in school. They do not appear to have unusual health problems. From past information we know that their risk of developing lupus themselves is quite low. Prospective parents should consider how the baby will be cared for if the mother is ill.



Pregnancy does not cure lupus. The new mother, or the family considering pregnancy, should keep in mind that the mother has an important illness, that this illness is unlikely to go away, and that there may be periods during which the mother cannot care for the growing child. Exhaustion is always a threat to the mother, but a newborn, hungry in the middle of the night, or a two-year-old, full of energy, will not understand this. Nor will a child understand if Mom has to stay in bed or has to go to the hospital. The family support systems have to be very strong. In most cases, the father will have to provide immediate back-up. Some families are lucky enough to have in-laws available, and some families are lucky enough to be able to hire help. Each family should think of the potential problems before the baby arrives and have solutions available to them. Fathers should capitalize on any family-leave policies that may be available at their places of employment and should fully participate in raising the child. Lupus pregnancies are difficult, but with support and cooperation, they can be extremely rewarding.

Answer 2

Ok I've been waiting on a diagnosis of lupus for 2 years I have antiphosphilipid syndrome and I have to give myself 2 injections of heparin daily I do not want to scare you but I have always had terrible pregnancies including a stillbirth giving myself shots everyday gives my baby a 70% chance of survival but luckily you'll get monitored closely I go every 2 weeks and I will start going every week after my 28th week which is next week I get ultrasounds, non stress test lab work and if I don't deliver by 37 weeks I will be induced at 37 weeks so good luck atleast with you knowing before your pregnancy you'll get the care you need I am just finding out with this pregnancy which is #7 and I have 3 children living it'll be better for you.

Answer 3

i dont have lupus, but my fiancees mother does. she found out when she was pregnant with him. she had him in her tubes. since you were already diagnosed with it, they will probly take the necessary precautions so you dont have problems. you very well may be on bed rest for the lot of your pregnancy. or you could have a normal one. with this being your first its hard to say. im not a doctor and cant answer your questions like the other person on here, but i know what my mother-in-law went through. its tough. but like i said, it was detected in you very early on. and my the way, she is doing great now. her meds are down to the lowest they can go for her. be patient, and make sure you ask your doctor everything. no question is stupid, especially if you think it will affect your baby. good luck