The Lupus Book: A Guide for Patients and Their Families, Third Edition (47 page)

are monitored at each visit. Pregnancy is associated with a physiologic anemia

that occurs as red blood cells are diluted out with the increased volume of body fluids. Therefore, the development of anemia must be significant in order to be a concern. At follow-up visits, I check a complete blood count, dipstick the

urine (which screens for protein and sugar), and obtain C3 and C4 complement

levels. A fall in complement values is an excellent indicator of disease flares in pregnancy. Additional testing is done only if the patient’s complaints or medical history warrant it. The patient’s doctor should make every effort to communicate regularly with her obstetrician so that they can work together as a team.

What Can the Patient Who Is Breast-Feeding Take?

Up to 20 percent of the NSAIDs taken by a mother who breast-feeds reaches

the infant and may cause a bleeding tendency or acidosis; therefore, these agents are not advised. Even though only 1 percent of antimalarial drugs are excreted

in breast milk, a recent study suggested that Plaquenil is compatible with breast feeding. It would also be dangerous to expose any infant to chemotherapy unnecessarily. The only antilupus drug that is safe to use with breast-feeding is prednisone. Studies have shown that doses of up to 30 milligrams daily taken

by the mother have no untoward effects on the baby. The advantage of breast-

feeding an infant applies only for the first 3 months of life. Breast-feeding after that time limits the physician’s ability to intervene in managing lupus activity and is not advisable unless the patient is in a complete remission.

THE FETUS

What Are the Chances That the Baby Will Have Lupus?

The risk that any child born to a mother with SLE will develop the disease is

small. The ‘‘lupus gene’’ or sets of genes predisposing to lupus has what doctors call ‘‘a low penetrance.’’ In other words, fewer than 10 percent of patients who carry a lupus gene will ever develop the disease.

If anti-Ro (SSA) and anti-La (SSB) are absent, the risk of being born with

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lupus is negligible. These rare occurrences are associated with the anti-RNP

antibody (see Chapters 6 and 11 for a review). Cutaneous neonatal lupus is seen in less than 5 percent of patients with anti-Ro or anti-La and is a self-limited, benign process that disappears within weeks to months. Congenital heart dysfunction or block is discussed in Chapter 22.

The chance that an offspring of a lupus patient will develop the disease in

childhood and adult life is 10 percent for females and 2 percent for males.

However, up to 50 percent will carry autoantibodies in their blood (especially

ANA) and up to 25 percent will develop an autoimmune disease (including

lupus) in their lifetimes. The most common non-lupus autoimmune process is

thyroiditis, which is usually mild and benign, followed by rheumatoid arthritis.

What Are the Chances of a Successful Pregnancy?

A recent literature review concluded that among nonterminated pregnancies of

mothers with SLE in the United States, the frequency of miscarriage was 17.5

percent; stillbirth, 6.9 percent; prematurity, 29 percent; and neonatal death, 8

percent. The last category included babies who died within 30 days of birth. All told, two-thirds or 67 percent of all lupus pregnancies produce a successful birth.

This is considerably less than the national rate of 85 percent. Most of the miscarriages can be traced to the antiphospholipid antibodies which, if identified, can lead to successful treatment during the next pregnancy. High blood pressure, systemic lupus activity, and gestational diabetes from steroid therapy also contribute to prenatal deaths. Prematurity, defined as birth before the 37th week of gestation, is quite common in SLE cases and is usually associated with an active maternal disease. There are, however, other factors for premature births, as evidenced by many of my healthy mothers who deliver early.

Is Abortion Safe and When Should It Be Considered?

Contrary to what some medical texts stated in the 1960s, abortion poses no

special risks for lupus patients. However, the decision to terminate a pregnancy should not be taken lightly, and moral, religious, ethical, financial, and social considerations must be discussed with the patient and her family. Speaking personally, the only times I advise an abortion is when the life or critical well-

being of the mother is at stake. This usually occurs when the only way to reverse serious organ-threatening disease, reduce hypertension, or prevent the mother

from going on dialysis is to terminate the pregnancy.

Family Planning and Birth Control

I’ve noted that, barring unusual circumstances, lupus patients are normally fertile. Women with SLE should ideally plan their pregnancies during a period of

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The Management of Lupus Erythematosus

disease remission or relative inactivity that has been sustained for several

months. Barrier methods of contraception such as diaphragms or condoms are

generally effective. Though less efficacious, spermicidal creams, sponges, or

jellies are also safe. Intrauterine devices (IUDs) should be used with caution, since they are associated with an increased risk of pelvic infection. Since lupus patients have difficulty fighting infection, this could be problematic.

Progesterone-containing contraceptives such as Micronor do not have any spe-

cific lupus-related complications or concerns and are safe in SLE.

Can Lupus Patients Take Birth Control Pills?

When estrogen-containing birth control pills first became available in the early 1960s, there were numerous reports of young women either developing lupus

or having their preexisting lupus flare while taking these agents. By the early 1970s, these reports completely disappeared. Nevertheless, many physicians

trained during this period who have not kept up with the rheumatology literature advise their lupus patients against taking oral contraceptives. What was responsible for the initial reports? First of all, birth control preparations in the 1960s contained much more estrogen than they do today. Also, estrogen-containing

contraceptives during that era had tartrazine preservatives, which are no longer used. As discussed in Chapter 8, aromatic amines such as tartrazines are known

to induce lupus.

Even though hundreds of my lupus patients have taken birth control prepa-

rations without difficulty, there are certain individuals who should not take them.

Estrogen-containing contraceptives are not recommended for patients with SLE

who have antiphospholipid antibodies, high blood pressure, migraine head-

aches, a history of abnormal blood clotting, or very high lipid (cholesterol or
triglyceride) levels
. These clinical subsets are associated with an increased risk of developing blood clots or having strokes. Beyond these groups, there is no

evidence that contemporary oral contraceptives induce lupus in a genetically

susceptible patient.
Progesterone-containing contraceptives do not present any
specific risks in SLE
. Also, several surveys have shown that ANAs do not develop as a result of taking birth control pills. Some published papers have suggested that estrogen-containing contraceptives induce disease flares in a minority of patients, but other studies failed to show any relationship. It appears that mild, reversible flares can occur in a small number of lupus patients taking birth control pills.

The Delivery and Postpartum Period

Mothers and their obstetricians should aim for a vaginal delivery. The incidence of cesarean sections is the same as in the general population except for unusually
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high-risk medical situations (e.g., uncontrollable blood pressure). Once the placenta is delivered, steroid levels drop. After 2 to 8 weeks, the body goes into a steroid withdrawal. If that extra fetal steroid boost was suppressing the lupus, this is the time when lupus flares. In order to prevent this, as noted above, I frequently see my lupus patients 10 to 14 days after delivery and give them 60

milligrams of Kenalog intramuscularly. This modestly dosed timed-release ster-

oid prevents steroid withdrawal symptoms from occurring and decreases the

risks of a postpartum flare.

Summing Up

Lupus patients are normally fertile unless they have very active systemic disease or have received chemotherapy. Lupus pregnancies are successful 67 percent of

the time; 13 percent fail due to antiphospholipid antibodies; and up to 30 percent of all deliveries are premature. If frequent competent clinical evaluations, blood testing, and good obstetric care are available, most lupus patients with mild to moderately active disease do quite well. Oral contraceptives should not necessarily be ruled out in family planning. Steroids can be safely used for exacer-

bations of lupus during pregnancy or for postpartum flares in those who choose

to breast-feed.

31

Economic Impact of Lupus in the

United States and Disability Issues

Few efforts have analyzed the impact that 14–22 million Americans with 120

different autoimmune conditions have on our economy. Two studies have con-

firmed that 2.5 percent of our Gross Domestic Product is spent on managing

musculoskeletal conditions. This approximated $193 billion dollars in the late

1990s. Further extrapolation of these figures suggest that lupus costs the public somewhere between $10 and $20 billion a year in direct and indirect costs. The

average lupus patient has an average of $10,000 to $20,000 in health care related expenses annually.

CAN LUPUS PATIENTS WORK?

Being able to work has a significant impact on our economy and productivity.

Fortunately, most lupus patients who wish to work are employed. This sweeping

generalization should be approached the opposite way. Why can’t some lupus

patients work? The answers include fatigue, inflammation, swollen joints pre-

venting the ability to perform required tasks, medications which alter the ability to function or think clearly, cognitive dysfunction from lupus, heart or lung

impairment affecting stamina or endurance, a lupus-related seizure disorder re-

sulting in a restricted driver’s license, or difficulty coping with the disease. It’s hard to get a good handle on numbers because most lupus patients are women,

and some are quite young. Therefore, many are classified as students, and still others as homemakers. Also, some lupus patients are in the retirement age group.

Patients with cutaneous lupus can almost always work, drug induced lupus is

transient, and SLE is divided into organ and non-organ-threatening disease. Several surveys have shown that fewer than 20 percent of lupus patients without

heart, lung, kidney, liver, central nervous system disease, autoimmune hemolytic anemia or thrombocytopenia are listed as being disabled. Social security guidelines make it relative easy for lupus patients with organ-threatening disease to
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obtain Social Security Disability and Medicare benefits. However, fewer than

half the patients in this category have taken advantage of what’s available and most are working full time. This calculation is also not accurate because many

lupus patients are working part time, or have had to change jobs or job descriptions in order have their needs accommodated.

What’s the Best Way to Be Able to Work?

In interviewing for a prospective position, be up front with your employer. Be

positive and tell them all the things you can do and do well. Most lupus patients work best in an environment where their hours are flexible and rest periods are available when needed. Professionals such as physicians, lawyers, or accountants can often set their own hours which takes their needs into account. Others can

seek out occupations where they don’t have to “clock in and clock out,” or can

work from home when they feel up to it. These include being a real estate agent, travel agent, home-based computer consultant, or telephone saleperson. Companies with more than 15 employees must comply with the Americans with

Disabilities Act, which mandates making a reasonable accommodation for in-

dividuals with special needs. Some of these accommodations might include min-

imizing sun exposure, restricting heavy lifting or repetitive motions in individuals with swollen joints, having enough rest periods during the day or more

time to perform a task, and being able to make time for doctor appointments.

Many lupus patients also have a household to maintain; my wife calls herself

a household engineer and feels that at times she works harder than I do. It’s

hard to have two full-time jobs! Nevertheless, working improves self-esteem,

acts as a healthy form of distraction, and gives one a sense of accomplishment.

Social isolation is less among those who are employed.

When You Cannot Work

Some lupus patients are no longer able to work or simply cannot be employed.

Disability can be temporary and total, temporary and partial, permanent and

partial, or total and permanent. Temporary disability allows one to receive benefits while undergoing a medical or surgical treatment. If disability is permanent and partial, revising one’s job description or responsibilities should be considered. Total, permanent disability usually qualifies one for Social Security Disability allowances and Medicare health benefits after two years of not working.

Private plans and state disability plans usually provide benefits until that time.