Read The Lupus Book: A Guide for Patients and Their Families, Third Edition Online
Authors: Daniel J. Wallace
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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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!
Even though most patients with SLE don’t like it, more than 90 percent take