The Lupus Book: A Guide for Patients and Their Families, Third Edition by Daniel J. Wallace

Author:Daniel J. Wallace [Wallace, Daniel J.]
Language: eng
Format: epub
Published: 0101-01-01T00:00:00+00:00

when he or she doesn’t have the disease. Occasionally, I come across what I

can only call a ‘‘lupus wanabee.’’ These individuals are convinced they have

the disease on the basis of reading and talking to their friends. It is very difficult to convince them that they don’t. Some want to be diagnosed as having lupus

perhaps for psychological reasons: they want loved ones to pay more attention

to them or feel sorry for them, or they want to prove to family members that

they are not ‘‘crazy.’’ Some may eventually find a doctor who will agree with

their self-diagnosis and treat them. But this is not the sort of illness that can be placated with innocuous and harmless treatments. The therapy for SLE involves

toxic, expensive, and time-consuming treatment. Disease-modifying therapies

(anything other than an NSAID) should never be given unless a firm diagnosis

[172]

Where and How Can the Body Be Affected by Lupus?

has been made or an organ-threatening complication is clinically evident. La-

beling a patient with SLE who does not have the disease can make it difficult

for him or her to obtain gainful employment, health insurance, or life insurance and can mean lifelong stigmatization.

WHAT IS ANA-NEGATIVE LUPUS?

Heidi was sure she had lupus even though six different doctors had obtained

six different negative ANAs in six different labs. She had a butterfly rash

on her cheeks, was tired and achy, and had a checkerboard mottling (called

livedo reticularis) on her legs. Finally, the third rheumatologist she saw

was sympathetic to her predicament. Even though her blood chemistry pro-

files, chest x-ray, electrocardiogram, sedimentation rate, CPK, anti-DNA,

and complement levels were negative or normal, Dr. Schwartz obtained

additional blood for testing. Heidi had a positive anticardiolipin antibody

and a false-positive syphilis serology. These antibodies are seen in 20 per-

cent of discoid lupus patients and are associated with livedo reticularis. Dr.

Schwartz also referred Heidi to a dermatologist, who did a lupus band test

on her cheek rash; it came back positive. A bone scan showed increased

blood flow to her hands and feet, suggesting an inflammatory arthritis. Dr.

Schwartz diagnosed Heidi as having ANA-negative lupus since she fulfilled

the criteria by having arthritis, sun sensitivity, discoid rashes, and a false-

positive syphilis serology. Three years later, Heidi’s ANA blood test be-

came postive.

Until 1985, 10 percent of all lupus patients had a negative ANA test. The

introduction of improved testing material for performing the ANA test has de-

creased this percentage to 3 percent. Between 1980 and 1989, my office treated

464 patients who fulfilled the ACR criteria for lupus; seventeen of them were

ANA-negative. In analyzing this group, we found that patients fell into four

basic categories. One-third had antiphospholipid antibodies and one-third had

biopsy-documented kidney lupus. Of the remaining third, half ultimately became

ANA-positive. The last group had advanced disease; prolonged treatment with

steroids and chemotherapy made their ANA disappear. A variety of rarer causes

of ANA-negative lupus exist, such as the presence of anti-Ro (SSA) antibody

without ANA. Nevertheless, if a patient does not fall into any of these four

categories, some of the lupus-related or lupus-mimicking disorders discussed in this chapter might be the culprit.

WHAT IS AN UNDIFFERENTIATED CONNECTIVE TISSUE

DISEASE (UCTD)?

Many

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