Positive Options for Living with Lupus (17 page)

In the past, antimalarials have been withdrawn during pregnancy because they cross the placental barrier, but a recent French study suggests that possibly hydroxychloroquine may after all be safe, although a full examination of the eyes of the babies born in the study (vision is at risk from antimalarials) has not yet been completed. Powerful immunosuppressants are also usually avoided, although Graham Hughes reports that as many as fifteen hundred lupus patients in the U.K. achieved successful pregnancies while on azathioprine. It is probably safer to say that the jury is still out on both drugs.

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The immunosuppressant cyclophosphamide is definitely off limits, as are the blood-pressure drugs known as
ACE inhibitors,
which can harm the baby if taken in the last six months of the pregnancy. (Other blood-pressure drugs can be substituted.) The anticoagulant (blood-thinning) drug warfarin, which can harm the embryo in early pregnancy, is also ruled out. Heparin is the preferred alternative.

Pregnancy and childbirth, of course, involve massive changes to hormone levels in a woman’s body. It would be surprising if pregnancy didn’t have some effect upon a condition like lupus, which is known to be highly sensitive to the balance between various hormones. Even the most scrupulous care in monitoring the mother’s health during pregnancy may fail to avoid a slight increase in the number of flares she experiences, but in general these are mild and easily controlled. There’s a greater chance of a flare-up immediately after delivery, when she experiences a sudden drop in progesterone, the hormone that has helped to maintain the pregnancy. To counter this effect, some doctors increase the dosage of steroids around the start of labor, gradually tapering it off only weeks after the birth.

Others prefer to increase steroids only if and when a flare-up occurs. This is because at the time of birth it’s important to consider what drugs may get into the mother’s milk and so affect the baby.

Breastfeeding has such wide-ranging benefits for the baby that the obstetric team does everything to make it easy for a new mother to breastfeed. And this may mean, shortly before the baby arrives, reducing drugs like antimalarials or aspirin that have helped keep the pregnancy flare-free. Once again, steroids do not pose a problem.

Risks to the Baby

The biggest risk to a lupus birth is that it may occur too soon. As mentioned, even with advanced, modern treatment about a quarter of lupus births are premature. These days, hospitals’ premature-baby units are so sophisticated that we have become almost blasé about the problem, but it is still the goal of all good obstetricians POL text Q6 good.qxp 8/12/2006 7:39 PM Page 107

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that mothers go to full term, that is, between thirty-five and thirty-seven weeks, or at the very least until the baby weighs three and a half pounds. Premature babies have difficulty controlling their body temperature (and therefore have to spend a period in an incuba-tor); they are also likely to have problems breathing because their lungs are not fully developed, or to have difficulty sucking. At the very least, prematurity risks interfering with the bonding between mother and child that develops with established breastfeeding.

A number of risk factors common to all pregnancies can be more problematic for a lupus mother. One is a condition known as
preeclampsia,
or toxemia of pregnancy, which occurs when the kidneys, overwhelmed by the extra work of filtering the blood supply for an additional person, fail to eliminate all the waste products they usually clear from the bloodstream. Preeclampsia occurs late in pregnancy and is signaled by a rise in blood pressure, the presence of protein in the urine (normally filtered out by the kidneys), and edema (fluid retention) that causes puffy ankles, fingers, and knees—another sign that the kidneys are not working well.

As you might deduce, preeclampsia is the prelude to a condition called eclampsia, which is fortunately extremely rare these days because the warning signs are usually detected. It occurs when the inability of the kidneys to clear fluid from the tissues leads to seizures, unconsciousness, and even possibly death. Regular monitoring of blood pressure and urine normally picks up the danger signals in time, and since the delivery date is usually not far away, the doctors typically decide to induce birth or even to perform a Cae-sarean section. Left unchecked, the condition threatens the lives of both mother and child. Preeclampsia is a complication that affects between 5 and 7 percent of all pregnancies but about 20 percent of lupus pregnancies.

One other risk factor affects lupus pregnancies more than others. At about the fourteenth week of pregnancy the obstetrician usually tests the mother’s blood for
alphafetoprotein (AFP)
. This is made almost exclusively by the baby’s liver, and it is quite normal for levels to increase to some degree. However, exceptionally high POL text Q6 good.qxp 8/12/2006 7:39 PM Page 108

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concentrations seem to be associated with serious abnormalities of the baby’s brain and spinal cord called
neural-tube defects (NTD)
.

Only a minority of babies born following elevated AFP go on to develop NTD, but it is important that lupus mothers be monitored because they are more likely to develop high concentrations. The good news is that this doesn’t seem to reflect a higher than normal chance that their babies will have NTD; rather it seems related to the increased risk of those babies arriving prematurely. It also seems to go with higher doses of prednisolone—possibly for women with less well-controlled lupus.

Will the Baby Be All Right?

You can see that in getting pregnant a woman with lupus is undertaking something that, while less hazardous than it was forty years ago, is nevertheless not risk-free. The questions all parents ask, including those without lupus, are: Will nine months of caution and careful monitoring produce the hoped-for reward? Will we have a healthy baby at the end of this pregnancy?

Lupus, as explained, is not directly inherited from mother to child. What does sometimes happen is that babies born to lupus mothers develop a short-lived, lupus-related condition called
neonatal
lupus. Up to the moment of birth, mother and baby have ex-changed blood through the placenta, and what seems to happen is that some lupus antibodies have snuck across the placenta and gotten stranded in the baby, where they inflame the baby’s skin.

Almost invariably the culprits are anti-Ro antibodies (a subset of ANA antibodies). Between 30 and 40 percent of lupus patients have anti-Ro antibodies, and between 10 and 20 percent of mothers with the antibodies give birth to babies who exhibit neonatal lupus.

At most we’re talking about 8 percent of all lupus mothers. But the situation gives the new mother quite a scare because the baby develops a butterfly rash.

It must be emphasized that this condition is rare. Graham Hughes, who has seen thousands of lupus mothers through preg-POL text Q6 good.qxp 8/12/2006 7:39 PM Page 109

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nancy, says he has only seen about a dozen cases in all his professional life. And it isn’t real lupus. It’s just a dying echo of the mother’s lupus, and it quickly clears up as the mother’s antibodies disappear from the baby’s blood.

Occasionally (in less than half the cases of neonatal lupus) the baby is born with a slight heart abnormality called
heart-block;
the electrical impulses of the heart are irregular, making it sound as though it is stopping. But it doesn’t. In itself slight heart
arrhythmias
are not life-threatening. (In older people they can be a warning of something that
might
be life-threatening.) In a very few cases—we are now getting down to vanishingly small percentages—the baby’s arrhythmia is serious enough to require a pacemaker.

For Those Who Don’t Want to Get Pregnant

Dora’s Story

Dora had a bad pr egnancy in the early 1 990s. She had blood clots and inf lammation in the v eins of her legs (thr ombophlebitis) and fragments of blood clo ts in her lungs (pulmonary emboli). Her doct ors advised her no t to get pregnant again, so she started taking the contraceptive pill. Then she developed some weird, really painful red lumps on her legs. Her doctor was bewildered and referred her to a rheumatologist, who carried out blood tests. The rheumatologist told Dora that she had both lupus and APS. The lumps, she was told, were erythema nodosum (Greek for “red lumps”), a form of
vasculitis
not exclusive to lupus sufferers though more common among them, which occasionally appeared on other parts of the body . The rheumatologist took Dora of f the pill and in its place r ecommended a diaphragm.

If a woman with lupus decides she would rather not get pregnant, what should she do? To all appearances, controlled lupus has no effect on fertility, although fertile periods are sometimes interrupted during a lupus flare-up. If she wants to avoid or plan pregnancy she needs some form of contraception. The female hormone POL text Q6 good.qxp 8/12/2006 7:39 PM Page 110

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estrogen is known to exacerbate lupus symptoms, and thus for twenty years the usual advice has been for lupus sufferers not to use the birth-control pill, especially those who experience the migraine and clotting problems associated with APS. However, a survey of patients at St. Thomas’ Hospital found that the same proportion of female lupus patients were taking oral contraceptives as of nonlupus mothers, with no apparent increase of side effects. Then, at the end of 2004, the Safety of Estrogens in Systemic Lupus Erythematosus National Assessment (SELENA) study, conducted in the United States, reported similar results. Dr. Michelle Petri of Johns Hopkins Hospital told the annual scientific meeting of the American College of Rheumatology (ACR), “This is a clinical trial you can take home with you. It will change the way you practice.” Henceforth, the trial concluded, oral contraceptives should be regarded as acceptable for the two-thirds of lupus patients who are not at risk of thrombosis. This is good news because women with lupus are at higher-than-average risk of osteoporosis as a consequence of taking steroids, and estrogen is known to protect against this condition.

Lupus patients who also have APS are still advised not to use any form of hormonal contraception—whether the pill, injections, patches, or implants—because they may aggravate circulatory problems, high blood pressure, vasculitis, and thrombosis. Some doctors believe that progestogen-only contraceptives are acceptable, but in general Sheldon Blau’s advice remains: “Shun all forms of hormonal contraception.” Intrauterine devices (IUDs) are also unsuitable for lupus patients because they have a higher likelihood of suffering perforation, bleeding, or pelvic infections with the device. For some female lupus patients, as you can see, it comes down to good old barrier contraceptives: the diaphragm and condoms. These, of course, however inconvenient they may seem, have the added advantage of protecting against sexually transmitted infection.

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Chapter 11

Foretelling the Future

Hippocrates, ancient Greek physician and father of medicine, gave his pupils modest goals: to help, or at least to do no harm. His instruction comes not from the celebrated oath—still taken by many medical students today—but from another of his writings called the
Epidemics
. Translated in full it reads, “Declare the past, diagnose the present, foretell the future; practice these acts. As to diseases, make a habit of two things—to help, or at least to do no harm.”

Modern physicians have more ambitious goals: to bring relief, to cure, and (the Holy Grail) wherever possible to prevent illness.

In some cases—for example with childhood diseases and infections, and with diseases caused by dietary deficiency—they have had spectacular success. In the case of the many forms of arthritis their success has been confined to bringing relief, controlling symptoms, and preventing the worst damage. Cure is still a long way off; prevention even further.

As for the future, doctors’ ability to predict medical outcomes has made rapid strides in modern times. Researchers believe that there is hope that their understanding of autoimmune diseases such as rheumatoid arthritis will provide greater control over outcomes in the not too distant future. Understanding opens the door to more precise, effective treatment, and side-effect-free treatment is the penultimate stop before cure. Prevention depends ultimately on understanding not only
what
goes wrong, but
why,
which, in the terms
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of the current hypothesis about autoimmune diseases, means identifying the triggers that set off the abnormal autoimmune reaction, and the genes that make some people susceptible in the first place.