The Lupus Book: A Guide for Patients and Their Families, Third Edition (38 page)

are unrealistic—try to replace them with other hopes. Try to balance a loss with a gain. How can you improve your spiritual well-being? Learn to relax, learn

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to rest and to exercise. If you don’t have a sense of humor or if it is suppressed, discover laughter. Laughter is an excellent tonic for the body. Give affection to others and you’ll receive it back. Learn to share yourself. Don’t worry about

tomorrow and focus on what you can do today. What kinds of things do you

like to do and how can you do them? Exchange negative thoughts for positive

thoughts and reinforce them. Socialize. All these things help to make you feel

better about yourself and to conquer depression.

Marriage, Family, and Sexuality

Darleen and George were happily married for 5 years when Darleen was

diagnosed with SLE. George had grown up with learning difficulties and

had had limited educational opportunities. Darleen tried to tell him what

lupus was, but he didn’t seem to pay attention. When Darleen was put on

steroids and gained 20 pounds, George made fun of her appearance. One

night her joints were so swollen that she couldn’t even get into the car to

go to George’s friends’ house for dinner. George said that her joints looked

OK to him and started yelling at her. Over the next few months, George

started drinking heavily and lost interest in sex. Darleen was scared to talk

to him, and one day he just didn’t come home.

Unfortunately, reports suggest that within 5 years of the diagnosis of lupus,

nearly half of married women are divorced. This results from many of the emo-

tional changes discussed above and a coping problem on the spouse’s part.

(‘‘What do you mean you can’t go out with me tonight? You look fine!’’) When

women complain of difficulty in keeping up with household chores, or work-

place demands, or responsibilities to their children, relationships become pre-

carious. After they have been diagnosed, I ask lupus patients to bring their

boyfriends or husbands to a counseling session. They shouldn’t feel that they

are ‘‘out of the loop’’ or that the doctor may be hiding things from them. If

possible, spouses should be included in any decisions.

Spouses should know that steroids can alter appearance, mood, and behavior

and that family responsibilities might have to be shifted for a time. Parents may ignore problems, smother the patient, or act somewhere in between and be appropriately supportive. It is up to the patient to decide what role they should be assigned, if any, as part of the recovery plan.

Surprisingly, very few of the reasons for divorce among patients with lupus

have anything to do with sexuality. A detailed survey showed that only 4 percent of women with SLE had major problems with sexuality. Most of these cases

dealt with a dry vagina from Sjo¨gren’s syndrome (also causing dry eyes, dry

mouth, and arthritis) that is difficult to lubricate and can cause painful intercourse. Other cases involved women who understandably complained of being

too tired to participate in sex. Destructive hip changes from arthritis or avascular
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[203]

necrosis also make lovemaking difficult, but they are easily resolved with cre-

ative sexual positions and/or corrective surgery. Divorce or separation arises

from not being frank with a loved one, altered expectations, lack of knowledge

about lupus and how it can affect mood and behavior, and from husbands’

reactions to learning that their wives cannot bear children—which of course

does not apply to all women with lupus. (See Chapter 30, ‘‘Can a Woman with

Lupus Have a Baby?’’) Keep all communication channels and support systems

open!

Support Groups, Self-Help, and Counseling

The Arthritis Foundation and lupus associations provide self-help groups su-

pervised by trained professionals like psychologists or social workers. They

provide intrinsic support, disease education, emotional warmth, means for

friendly communication, and closeness with others. Working together, they can

help a patient reverse a negative self-image and self-defeating attitudes through a supportive atmosphere. This can lead to more hope, improved self-esteem, a

redirection of energy and a sense that one is not alone.

Sometimes, one-on-one psychologic counseling is advisable. On occasion,

medication is required, and this may be prescribed by a psychiatrist. Psychiatrists are medical doctors, all of whom are taught about lupus and autoimmunity in

medical school. Psychotherapists and rheumatologists should work together as

teams. Tricyclic antidepressants such as Sinequan, Pamelor, Elavil, and Norpra-

min promote restful sleep, raise pain thresholds, relax muscles, and improve

mood. Specific serotonin reuptake inhibitors such as Prozac, Zoloft, Lexapro,

or Paxil may be used with or without tricyclics. Taken in the morning, they

often increase energy levels, promote weight reduction, relieve depression, and diminish obsessive-compulsive tendencies. Combination tricyclic/serotonin

boosters such as Effexor are also effective. Additional goals of psychological

intervention are to increase self-control, patience, tolerance, flexibility, and cre-ativity.

Cognitive Therapy, Biofeedback, and Stress-Reduction Strategies

Cognitive behavioral therapy
is a useful approach for patients with lupus who have difficulty learning, retraining, processing, recalling, finding words, focus-ing, concentrating, planning, or organizing. Cognitive dysfunction or impairment is usually intermittent and in part reflects spasms of blood vessels which supply oxygen to the brain and which is part of a dysfunctioning autonomic nervous

system (reviewed in Chapter 15). Cognitive therapists are usually psychologists, occupational therapists, or speech therapists. They urge their clients to use memory aids, such as placing project lists and Post-its around the house, decreasing

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distractions, forming mental pictures to assist with associations, and not getting frustrated when trying to find words. Therapists show patients how to use cues, designate one spot at home as the repository for all reminder notes, and write

things down so they will not forget. Having regular daily routines, using timers or alarm clocks, and having a regular filing system are also helpful.

Relaxation exercises can decrease sympathetic nervous system activity, slow

the heart rate, and improve oxygen delivery to the muscles and brain.
Biofeedback
teaches patients to control their body responses in order to minimize anxiety, provide relaxation, and promote pain relief by making normally uncon-

scious bodily actions conscious. Deep-breathing exercises, relaxation tapes, and visualizing pleasant environments (called guided imagery) decrease muscle tension, pain, and stress. Biofeedback is particularly helpful in patients with Raynaud’s phenomenon. In
EEG biofeedback
helpful beta brain waves are encouraged while disruptive alpha waves are suppressed.
Yoga
combines deep

breathing, meditation, and specific postures that integrate mental, physical, and spiritual energies to enhance well-being.
Transcendental meditation
enables patients to focus on a single thought or object to create an inner calm which

banishes stress.
T’ai chi
adds passive movements to achieve this result. Also, never underestimate the power of
prayer
along with quiet contemplation.

Children and Adolescents

Children with lupus need to be treated like any other children. Although there

are restrictions on sun-related and certain other activities,
they should not suffer
because of their parents’ guilt and they should not be overprotected
. Many children instinctively deny their lupus; this is OK if they take their medicine and follow the usual precautions. Be matter of fact with them in discussing the disease.

On the other hand, children of mothers with SLE are often unusually astute

and aware of their mothers’ problems. Most of my female patients with young

children have been asked at least once, ‘‘Mommy, are you going to die?’’ Be

honest with your children and don’t hide important things from them. They are

bound to find out. Couch whatever you tell them in hopeful and positive terms.

They can be a source of pride and joy and deserve to be part of your support

system.

Teenagers with lupus present special problems
. They are concerned with hair loss, rashes, and fatigue, which prevents them from participating in social activities, and with sun exposure (Chapter 24). They want to know about preg-

nancy. Adolescents need a certain degree of independence and responsibility;

they need friends and often try to be away from parents, whom they perceive

as embarrassing to them. Steroids alter appearance, hair growth, mood, and

behavior, which affects dating, jobs, and school life. Compliance is a major

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problem and the consequences of not taking the prescribed medication or less

of it should be emphasized.

Joelle is a 16-year-old girl with multisystem active lupus. It had been under

good control until she fell in with a new crowd that went to the beach

every day and stayed out very late at night. It was summertime and her

rashes started getting worse. This flared her joints and started causing low-

grade fevers. Because she put on a partially adequate sunscreen, Joelle did

not think that sunbathing was wrong and told her mother she was going

out with friends. Instead of taking the 20 milligrams of prednisone pre-

scribed, she took only 10 milligrams because she did not want her face to

look puffy or to develop facial hair. Ultimately, her doctor noticed that her

anemia was so severe that she was on the verge of needing a transfusion.

She was therefore hospitalized. A few days of intravenous high-dose ster-

oids stabilized her and the medical interns and residents on the case spent

extra time with Joelle giving her emotional support. Her family was called

to Joelle’s bedside and the doctors discussed with them the importance of

compliance, sun avoidance, and the dangers of not adequately treating the

disease. A support system was devised to prevent further problems.

Approaching the adolescent requires unique solutions. First, talk to school

personnel and see if they will work with the child. See if there is any way

concerned classmates and educators can be informed about the disease and the

special considerations that may apply. Also, are there important people in the

teenager’s life who are role models, such as trainers, coaches, teachers, clergy, or extracurricular activity instructors that can be brought into the loop? Finally, try to direct the teen’s energies into constructive hobbies or interests or safe projects.

Avoid Unproven Remedies

There are times when lupus patients can feel desperate, and medical quackery

is a multibillion-dollar-a-year industry whose claims seem tempting at certain

moments. Any promotion that offers a cure for lupus should be suspect. Don’t

believe testimonials if the article has not appeared in the peer-reviewed medical literature. Be careful of treatments that are very expensive, such as chelation therapy, fetal animal hormone extracts, or monthly gamma globulin infusions.

Some ‘‘natural vitamin and mineral’’ products contain alfalfa sprouts or other

suspect chemicals that can aggravate lupus. L-tryptophan was an over-the-

counter ‘‘natural’’ supplement whose metabolites induced scleroderma in 2000

people and killed 50 of them before it was removed from the market in 1989.

Mexican border clinics that promise cures treat lupus with steroids combined

with a dangerous NSAID called phenylbutazone, which is no longer available

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in the United States, since it can cause leukemia and bone marrow shutdown.

Some Chinese herbal remedies contain sulfa derivatives and other substances

that trigger allergic reactions in most lupus patients. Some lupus patients flare when using an herbal cold medicine, echinacea. Consult a physician before using any nonprescription drugs or potions. One of the first things I learned in medical school was ‘‘Do the patient no harm.’’ And
you
should remember ‘‘Caveat emptor!’’

Summing Up

If you have lupus, you have at least half a million Americans for company.

Take hold of yourself and don’t become overly upset. If there’s no organ-

threatening disease, you have a normal life expectancy; even if there
is
such disease, you will still live a long, long time. The disease will not go away.

Although its course waxes and wanes, it is a permanent, chronic condition. It’s OK to be angry, frightened, guilty, anxious, and depressed at first, but these

emotions can be overcome. The sooner you develop adequate coping mecha-

nisms, build up a good support system among family and friends, and start to

work on a positive and realistic life-style, the better you will feel physically and mentally. Who knows, it may even make the lupus better!

26

Taming Inflammation:

Anti-inflammatory Therapies

Even though most patients with SLE don’t like it, more than 90 percent take