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http://www.nurseslearning.com/courses/nrp/nrp-1601/course/section1/index.htm
Introduction
This book is for the more than 600,000 women and 60,000 men in the United
States who suffer from lupus. I write from firsthand knowledge. I am a nurse
and also a lupus patient. As a nurse with lupus, I don't minimize suffering or
pretend that only physicians know what is best for the individual. Lupus is a
strange and terrible disease. One day a person feels fine and the next day she
can't get out of bed. She may have pain so excruciating that she spends the
whole night in the bath tub, crying as she works to keep the water as hot as
she can stand it. Another night, for no discernible reason, she may feel well
enough to go dancing. Lupus may attack a patient's kidneys, heart, or brain, or
her only symptoms may be joint pain or that lupus rash on nose and cheeks.
Lupus causes depression. So do sortie of the medications that treat lupus.
Whatever the symptoms, lupus is a chronic and as yet incurable disease. What is
lupus? What are its manifestations and how is it diagnosed? Which physicians
specialize in this disease? What medications do they use, and why? What about
the alternative or complementary treatments? LUPUS WHAT'S IT ALL ABOUT? answers
these questions and many more. Three physicians, lupus specialists, share their
thoughts about lupus and lupus patients. Arheumatologist explains what a
patient can do to help her physician provide her with the best treatment. An
internist, who uses herbal medicine and acupuncture as well as traditional
medicine, describes his holistic approach. A research physician shares the
exciting research he is doing. Psychological well-being is an essential part of
lupus treatment. My co-author, Mary McClure Goulding, an internationally
recognized teacher of psychotherapy, presents techniques for improving the
quality of life by using breathing exercises, relaxation, imagery, and
story-telling. She teaches assertiveness, and how to substitute self-caring for
worry and unhappiness. In the chapters, "Your Work Life" and "Your Home Life,"
everyday issues are presented and discussed, such as short cuts in housework
and whether to keep your job or apply for disability benefits, pins a step by
step guide to applying for these benefits The mysteries of computer use are
made easy, so that readers can join chat groups and get the newest information
about lupus. To me the most inspiring section in this book is 44 women and Men
with Lupus Tell Their Stones." Each lupus patient is unique, and responds
uniquely to this disease. One woman is now able to joke about a honeymoon that
ended in her near total paralysis, and tells of her long and successful
struggle to regain mobility. Four women, whose kidneys failed, describe their
quite different experiences with dialysis. A woman who is legally blind,
disabled, and almost seventy years old, survives on only $660 a month
Supplemental Security Income, but nevertheless manages to go to college. Some
men and women are employed and others have been forced by their illness to quit
their jobs. Some have children, some are childless, some have partners, and
some live alone. Two women reveal how their marriages were strengthened as
their husbands helped them cope with the trauma of lupus. Two women were
deserted by husbands who wouldn't tolerate their disease, one while she was
hospitalized in the intensive care unit. One woman ended a seven year
relationship with her lover, when she realized that she needed a more peaceful
life than was possible with him. A man, who couldn't even hold a glass or step
over a tiny bump on the sidewalk, put all his effort into an exercise program
that made him strong enough to compete again in sailboat races.
These women and men, Mexican-American, Black, Japanese-American, and White,
belong to lupus Support groups sponsored by the Lupus Foundation of America.
They have become intimate friends, as they tell each other their joy and pain.
I am one of them. Although I was a registered nurse when I was diagnosed with
lupus, I knew nothing about the disease. My physicians did the right tests and
then prescribed the right medications, but when I mentioned that I needed
fourteen hours of sleep every day, and that I often cried on the way home from
a perfectly fine day at work, their faces went blank. Usually, they changed the
subject. I began reading everything that was written on lupus, and started a
local support group for lupus patients. I wanted to learn what others did to
cope with this disease. It's taken years, but I think I now understand what we
lupus patients are going through physically and emotionally, and what we can do
to optimize our health. This book is my first, and the writing of it has been
demanding and sometimes awesome. It's also been plain fun, especially when my
family started sending ideas for book titles: Don't Be A Dufus, Read About
Lupus. Thrown For A Lupus? The Straight Poopus On Lupus. The Lupusite's Guide
To All Things Lupusitical. And, finally, Ask Not What Your Lupus Can Do For
You, Ask What You Can Do For Your Lupus. It is a serious subject, and at times
I can laugh about it. My goal is to share what I have learned with lupus
patients, families, friends, and health care providers, as well as with ill
people who have not yet been diagnosed but think they might have lupus. All of
these people are still trying, as I have tried, to find out:
* In the past male pronouns were used to designate men and women. Because most
lupus patients are women, in this book the female pronouns may refer to both
male and female patients.
Separator
What is Lupus
The official name of Lupus is systemic lupus erythematosus or SLE. It is a
chronic, inflammatory disease that affects different parts of your body. For
some unknown reason, your auto-immune system has gotten permanently out of
whack. In addition to doing its usual jab of attacking germs and other
unwelcome invaders in your body, it has begun attacking your body's own
tissues. It may be waging war against your skin, glands, bone marrow, blood,
connective tissue, or such organs as your kidneys, heart, lungs, or brain.
The symptoms are confusing, contradictory, and ever-changing. You may feel pain
in your hands and then in your gut, be very sick for days at a time and then
suddenly become almost symptom-free, without having the slightest idea why your
symptoms appear or disappear. That's the reason lupus is called "the disease
with 1,000 faces." Each person's experience with lupus is unique, as you will
see as you read what fourteen women and men say about their lupus in the
following section.
What else about lupus?
It is a chronic disease for which there is no known cure. It is not contagious.
You didn't get it from someone else, and you can't pass it on to your children,
loved ones, or anyone. No one can catch lupus from you.
A few men get lupus, and very rarely lupus shows up in females before
adolescence or after menopause; however, more than ninety percent of lupus
patients, are women of childbearing age. No one knows why this is true,
although researchers suspect that female hormones are in some way involved.
Since lupus is not contagious, why does one person get lupus and not another?
Perhaps certain diseases, contracted earlier her in a person's life, may leave
her susceptible to lupus. There may be genetic explanations. Lupus may be
caused by a virus or a "cluster of viral influences." Environmental causes are
a possibility. Researchers are looking carefully at patients' medical histories
and also are seeking genetic, environmental, and viral causes. So far,
unfortunately, the cause or causes remain undiscovered.
Hereditary factors are difficult to trace, because in the past lupus was rarely
diagnosed. Although a very old disease, until quite recently lupus was known
only to rheumatologists and the type of physician whose hobby was reading about
esoteric illnesses.
Now, every physician in America, and many lay people, know of lupus. In the
United States today it is estimated that more than 600,000 women and about
60,000 men have systemic lupus erythematosus. More than 15,000 new cases are
diagnosed each year.
Before lupus was well-known, physicians and the general public used to say,
"She's just the ailing type," or "She was born weak," or "It's all in her
mind." Surely, these remarks did not do much to make the life of a lupus
sufferer happier. Imagine what it is like to be unable to get out of bed, or to
hurt in every joint, and be told you are just weak or neurotic. Even today
women are called "hypochondriacs" when their diseases cannot be diagnosed. A
number of these women suffer from lupus.
Lupus is difficult to diagnose because of its changing and contradictory
symptoms. No one has all of them, but all lupus patients have some of them from
time to time. Most people with lupus have experienced the big four: exhaustion;
pain, usually in the joints; sun sensitivity; and that red rash that supposedly
reminded a French physician, almost 150 years ago, of "wolf bites on the face."
Where in the world did he see people with wolf bites on the face, especially
bites that didn't break the skin? Other medical historians believe that he
named the disease lupus because the rash looks like the darker shadings on a
wolf's face. Anyway, lupus is Latin for wolf.
That French physician wasn't the first to discover lupus. Good old Hippocrates
described the rash in about 400 BC.
If you suspect that you may have lupus, read the list of symptoms to see if
some of them apply to you.
Malar Rash. This red rash, for which lupus was named, appears over the bridge
of the nose and across both cheeks. If you are the type of person who likes to
imagine that rashes look like something other than just a rash, its form might
remind you of a butterfly. It may be visible for only an hour or two, or for
days or weeks. Usually, it comes and goes.
(Some people get a different rash, round and scaly spots that may show up on
any part of the body exposed to the sun, though it, too, is most common on the
face. If it isn't treated, it may leave white spots or scars. This is a
different disease, called discoid lupus.)
Sun Sensitivity. You may notice your rash for the first time after you've been
in the sun. You think you have a sunburn, except that it is different from
sunburns you've had before. Instead of pealing or turning into a tan, it
remains red and may have raised patches. Perhaps you were healthy until you got
a mild sunburn, and then the burn turned into welts and your joints began to
ache.
The sun is your enemy. Whether or not you have been a sun lover in the past,
your days of seeking the perfect tan are over. Even short exposures to the sun
may make your symptoms worse. And it's not just bright sun. Any exposure to the
sun's UVA and UVB rays, such as those reflected off sidewalks, sand, or snow,
are harmful to you. If you are one of the minority of lupus patients whose skin
is not sensitive to the sun, you may believe that the sun is good for you,
because its heat on your body makes your joints feel better. The truth is, no
matter what is happening to your skin, the sun's rays are stimulating the
production of auto-antibodies which activate your lupus. You cannot be outside
even on cloudy days without a longsleeved shirt, sun hat, and gloves,
especially between 11 am and 3 pm, when the sun's rays are strongest. For some
people, even prolonged exposure to halogen lights or copy machines may cause a
lupus flare.
Pain. Lupus pain may be very mild or may be terrible. "I hurt all over," some
say. One adolescent told her physician, "Even my hair hurts." The pain may be
sharp, a steady ache, or a burning sensation, and it probably is located, like
arthritis, in your joints, especially the joints of hands and fingers. Some
people also have swelling and tenderness in their joints. Some have pain in
their muscles rather than their joints. The pain may move around. One day it is
in your ankle and the next day in the back of your neck, and another day it is
everywhere. Or you may be lucky and not have much pain at all. Even if your
pain is severe, it is not constant and your physician can prescribe medicine
that will bring you relief, so don't despair!
Exhaustion. Exhaustion, like the pain and the rash, comes and goes, and almost
always is worse during the early stages of your illness. What's the exhaustion
like? In your pre-lupus days, you may have been the sort of person who raced
home from work, grabbed a mountain bike and rode ten miles before supper. Or
you may have ended the day tired, but able to go to the grocery store, fix
supper for the children, and throw a load of laundry in the washer before you
collapsed in front of the TV.
Lupus exhaustion is something new. As Tom (chapter 15,) said, "All of a sudden,
I got so tired I'd even have to rest on my way back from taking out the
garbage. How do you explain to anyone that you can't take out the garbage
without resting?"
You may wake up in the morning too tired to get out of bed. Other days you go
to work, but you have to lie down almost as soon as you arrive. On the way home
from work, you pull over to the side of the road to nap, before you can
continue your drive home. On bad days, grocery shopping and cooking are
impossible, and doing anything with children beyond reading to them is from
another lifetime. You may be too tired even to hold a book.
Again, everyone is different, some people feel vaguely tired, but can carry on
their usual activities. One of the strange aspects of this disease is that the
exhaustion, for no known reason, comes and goes. You may not be able to get out
of bed one day, and the next day you are again energetic.
Later, when you and your doctor have figured out what medications are best for
you, and when you have learned some simple ways to reduce stress and care for
your body, you'll get back your enthusiasm for living. You still will need lots
of sleep. Most people with lupus sleep at least ten hours out of every
twenty-four.
There are other symptoms besides the four most prevalent ones:
Depression. Depression is common in lupus patients. Anyone who suffers the pain
and exhaustion of lupus might be expected to be depressed, but a lupus
depression is more than simply a response to a chronic and very difficult
physical illness. It seems to be organically based, meaning that your body
produces your depression, just as it also produces rash, exhaustion, or pain.
The classic symptom of this type of depression is an overwhelming feeling of
despair. Patients may or may not verbalize this despair, but the words that go
with such despair are, "There's no hope for me," "Nobody can help me," and
"There is nothing worth living for."
In reality, there is help and hope for you, and you'll find much to live for. A
lupus depression is curable, but in the midst of your depression, you may not
believe this.
Easy Bruising. You don't know that you bumped your arm or leg, until you see
your black and blue bruises. Sometimes lupus medication causes this condition,
but it may also be a sign that your lupus is attacking the platelets, which
allow your blood to clot.
Hair Loss. You notice that your comb or brush are full of hair, and you may
find hair on your pillow. This is an occasional occurrence during lupus flares,
and won't be continuous.
Fever. Some people run a consistent low-grade fever, perhaps 100 degrees.
Others run high fevers that come and go for no apparent reason. Check your
temperature when you think you are running a fever.
Chest pain. You may feel a sharp pain in your chest that is not a heart attack.
Usually, the cause is inflammation of the connective tissue between your ribs.
However, the pain may be due to inflammation of the lining of your heart or
your lungs. This needs immediate treatment. A physician can differentiate
easily between heart, lung, and connective tissue inflammation.
Edema. If your kidneys are affected, one of the first signs is swelling (edema)
of your legs, ankles, and feet. You may see in the mirror that there is also
swelling around your eyes. Again, see a physician right away, preferably a
nephrologist, a physician who specializes in kidney diseases. Early treatment
can save your kidneys.
Cold hands and feet. As with other lupus symptoms, coldness in the extremities
can be caused by a variety of physical problems, so it is not by itself a test
for lupus. If your fingers turn white when cold, and bright red when warmed,
you may have Raynaud's syndrome, or Raynaud's and lupus together.
Dry Eyes and Dry Mouth. This symptom occurs in about ten percent of lupus
patients, and sometimes means that your lupus is involved in the glands that
produce saliva and tears. You may have Sjogren's syndrome, a different, usually
quite mild disease that often accompanies lupus. Or, as with other symptoms,
your dry eyes and mouth may be caused by something that has nothing to do with
lupus.
Confusion. Driving your car, you suddenly don't know where you are going, or
how to navigate streets that in the past you knew well. Routine jobs you've
done dozens of times become impossible to figure out. Usually your confusion is
shortlived, but for some people it hangs around for a longer time. Some
medications can clear up confusion, and others actually cause it. No wonder
lupus patients need good doctors and lots of emotional support! If you have
symptoms of confusion, you need someone to help think for you, so you don't
make precipitons decisions, as Vera (Chapter 9) did, when suddenly she couldn't
remember how to run the computer at work. She fled from her job out of fear and
shame, instead of taking the sick leave she deserved. In a short time, her
memory returned, but it was too late to get her job back.
Neurologists are finding other symptoms in addition to confusion, including
inability to remember words, coordination difficulties, and headaches. These
symptoms, now grouped together, are called neuropsychiatric lupus.
Pre-Menstrual Flares. Whatever your lupus symptoms, you will probably notice
that premenstrual flares are common. Just before your period is due, your
symptoms become worse. You'll learn to take special care of yourself, and not
plan difficult or taxing activities at this time each month.
Those are the common symptoms of lupus. To know which symptoms apply to you,
you need to be aware of your own body and what is going on with it. Perhaps in
the past you were a person who took your body for granted. Most people do. From
time to time they exercise, go on diets, or lie in the sun to get a good tan,
but mostly they don't concern themselves with their bodies. If you have lupus,
you must concern yourself with your body. Your life may depend on it.
No one has every symptom, and each of the symptoms, seen alone, can point to
problems other than lupus. If you have three or four of these symptoms, or if
any one of these symptoms is severe, you'll want a physician to order
laboratory tests to help diagnose your illness.
A few people with lupus, especially those who are on steroids for treatment of
other diseases, have such minor symptoms that they hardly even know they have
the disease. Others feel very ill right from the beginning. In the past, the
majority of lupus sufferers died within a few years, but today almost everyone
with lupus can live out a full, active life. You can, too, especially if you
and your physicians do a good job of taking care of you.
Probably you don't need urging to make an appointment with your physician. Even
if in the past you've been the type to avoid doctors, this time you know from
your level of pain, fatigue, and general distress that something is very wrong
with you.
But when you get to the doctor's office, you may feel much better and your rash
may have subsided, You may be a bit embarrassed that you are taking a
physician's time with something that has already "gone away." On the other
hand, you may be too exhausted and depressed to explain satisfactorily what you
are experiencing. It may seem hard to speak convincingly about how much you
hurt or how tired you are.
In order to give a complete report to your physician, reread the list of
symptoms, and write down all of them that you have experienced, plus any others
that are not listed. That way, you'll be able to present a clear picture of
what has been going wrong with your body.
Although no one can cure your lupus, much can be done to alleviate your
symptoms and prevent permanent damage to your vital organs. Remember, more and
more studies and experiments are being undertaken to find new ways to treat
systemic lupus erythematosus. In the future, who knows what new treatments or
even cures will be available? If you and your physicians do everything possible
for your health today, you'll be ready as the newer and better treatment
methods arrive.
In the following chapter you will learn more about how physicians diagnose and
treat systemic lupus erythematosus. You'll learn which medical specialists you
need, and how to find them. You'll learn about medications, as well as
complementary or "new age" medicine. In addition, you'll discover many simple,
enjoyable, and effective methods for helping yourself.
You'll also get to know some lovely, exciting women and men, who report on how
they have managed to live with lupus. Each person describes her particular
symptoms, and her own unique methods of coping with problems at home and at
work. They are members of lupus support groups, which meet regularly to share
information about lupus, and have fun together.
Separator
Finding a Doctor and Getting a Diagnosis
First of all, let's assume that you have some symptoms of lupus, and are
looking for a good physician. Perhaps you have a primary care physician. You
may want to see this person for your first appointment, or you may have no
choice for the first appointment. If you are hurting badly and have frightening
symptoms, you don't want to dally around, looking for a new physician. It is
understandable that you need someone right now. With luck, you have a primary
care physician whom you like and find easy to talk with.
If not, make an appointment with a rheumatologist, because these doctors
specialize in diagnosing and treating lupus. Remind yourself that you can
choose a new physician at any stage of your treatment. More about that later.
Now you need to prepare for your appointment. In the old days, that meant only
that you should take a bath and wear clean, nice underwear so that the doctor
would think well of you. That was what your grandmother was told, when she was
a child. In her world, her family doctor knew her entire family well, and made
treatment decisions that everyone obeyed. In today's world, the practice of
medicine is more technical and scientific - - actually, it is far better
medicine - - but physicians are busier, may not know your family or you, and
they definitely need your help.
You can do your part by gathering the necessary medical information ahead of
time. Before your appointment, write down your family medical history, your
medical history, a list of past and present medicines that have been prescribed
for you, your current symptoms, and your questions about your symptoms. Use
four sheets of paper.
On the first sheet, write the significant diseases that members of your family
had. If you don't know what is significant, put down all the diseases you
remember. Include on the list the causes of death of your grandparents,
parents, aunts and uncles, and brothers and sisters.
On the second sheet of paper, write your own medical history. Write the names
of all illnesses and all surgeries you have had, with approximate dates, as
well as the names and phone numbers of physicians you have seen recently. If
you are allergic to any medicine, don't forget to list it, too! List each
medicine you are currently taking, the dosage, and how long you have been
taking it. Also list medicines that you have taken during the past year or two,
and are no longer taking If you are uncertain of the names of these medicines,
put all your medicines in a bag and bring them with you.
On the third page, list the symptoms that you have experienced during the past
month. Re-read the symptoms listed in the first chapter of this book, to help
you remember, and be sure to write down any symptoms that are not on that list.
Underline the symptoms that led you to make this appointment, the ones that are
especially troublesome or painful.
The fourth sheet of paper, which you need for every visit no matter how often
you see a physician, is your list of questions. Always, keep a written list of
questions that you want to discuss with your physician. Otherwise, during a
brief, hurried appointment, you may forget them.
Now that you have the information your physician will seek, plus your own
questions, you need to put yourself in the right frame of mind. Some people are
afraid of doctors because of past experiences, or because their parents were
afraid. Some go into a doctor's office as if they are peasants being brought
before the King or Queen. It is important that you maintain your self-esteem
and dignity. Ignorance and poor self-esteem lead to poor treatment and,
therefore, a worsening of your symptoms.
Tell yourself, as you walk into the office, "I am not a little child. I am a
competent adult." You are not in a physician's office to please the physician,
or to prove that you are sweet, lovable, respectful, or brave. Remind yourself
that the physician is neither your parent nor your god. You don't have to prove
that you are ill. You already know that fact. You are there for the physician
to use her* expertise to diagnose your illness correctly and begin treatment.
You are there to get relief from your symptoms.
You are keeping an appointment with a physician in order to receive expert help
for your body. It is similar to seeking expert help for your home, if the roof
leaks or there is a strange odor under the house. Whether you are hiring
someone to repair your body or your home, you are in charge. You are talking to
a doctor who is your employee, not your judge. And you will decide whether to
continue to hire this person or seek another physician.
Someone in the physician's office will ask for your family history and your
personal medical history, and, of course, what is troubling you that led you to
make this appointment. You will take out your notes, and begin.
(If, after you have been seen by your doctor, she merely suggests 'rest and
aspirin," find another doctor immediately. Even today there are physicians who
overlook the disease of lupus, or the seriousness of the disease. They still
believe that their patients are depressed or hypochondriacal. These doctors
should be avoided like the plague!)
Your physician will conduct a physical examination. In addition to the usual
physical examination you've had lots of times, this physician will pay special
attention to the areas of your complaint. She will be checking for signs of
lupus. She will look for oral ulcers, which have the appearance of cold sores
and are caused by inflamation. To give an example of the contradictoriness of
lupus symptoms: some patients have oral ulcers so small that physicians can't
see them, but they hurt so much that patients know exactly where they are;
other patients have large, painless ulcers they didn't know existed
The doctor will palpate for tenderness around joints and areas of suspected
inflammation. Your legs will be checked for signs of swelling. The doctor will
examine your rashes, and order a biopsy if there are welts. Some lupus patients
have serositis, which is an inflammation of the linings of heart, lungs, or
intestines. The physician will listen through a stethoscope placed on your
chest, for abnormal sounds such as those made by fluid, rubs (friction), or
murmurs.
After the physical examination, your physician will order lab tests, and
prescribe medication for relief of your symptoms. There is no reason for you to
keep on hurting. You do not need the results of tests to be given medication
for symptomatic relief.
Laboratory work is necessary for diagnosis; lupus is well known for mimicking
other diseases, so you may seem to have lupus when in fact you have something
else. You need tests that are specifically designed to find the lupus
autoantibodies, as well as tests that will specifically rule out rheumatoid
arthritis, MDS, Lyme's disease, leukemia and lymphoma, neurologic disorders,
tuberculosis, chronic fatigue syndrome, and other diseases.
You may be hospitalized for the laboratory work or you may he able to have the
work done as an outpatient, depending on the seventy of your symptoms.
Perhaps your doctor prefers not to order these tests but instead immediately
refers you to a specialist: an internist, dermatologist, nephrologist,
rheumatologist, neurologist, or cardiologist, depending on your symptoms. The
specialist will order these tests.
A complete blood count is necessary. You've had this test before, because it is
given as part of mass annual physical exams. This time, the physician is on the
alert for a low white blood cell count, low red blood cell count, or a lower
than normal level of platelets. A low red count will show that you are anemic,
and the cause might be lupus. About half of all lupus patients have a low white
count and/or low platelets; which indicates a chronic, active disease.
Blood chemistry tests, which differ from the complete blood count, will be
ordered to assess liver and kidney function, nutritional adequacy, and the
presence or absence of infection.
ANA (antinuclear antibody test) is performed on serum from your blood. It is an
important test for diagnosing lupus. The titer (strength) of the ANA gives an
indication of the severity of the patient's disease, as it shows the presence
of antinuclear antibodies in the bloodstream. Not all positive ANA tests
indicate autoimmune disease; in fact, some perfectly healthy people have a
positive ANA. If your ANA is positive and they suspect lupus, more specific
autoantibody tests will be performed, such as Anti-Smith, anti-DS DNA to
predict which organ systems may become endangered from your lupus.
A urinalysis will be ordered, to check for diabetes as well as to look for the
presence of protein, or red or white blood cells in the urine, all of which are
signs of impairment of the kidneys. To diagnose lupus nephritis (kidney
disorder), the physician will do a urinalysis, including an analysis of a
twenty-four hour urine collection, blood studies, and perhaps an X-ray to
determine the size and shape of your kidneys. Sometimes a biopsy is needed to
assess the extent and severity of kidney disease.
You will be given a serologic test for syphilis. For some reason, a false
positive result on this test is an almost sure sign of lupus. A false positive
result means that the test says you have syphilis, but you don't have it. On
the other hand, you can have a negative result and still have lupus.
Because lyme disease and systemic lupus erythematosus have very similar
symptoms, it's a good idea to run the lyme titer test, Unfortunately, some
lupus patients get a false positive result, so a follow-up blood test, called
Western Bloc, will have to be ordered.
If the results of any of these tests indicate the possible presence of lupus,
other tests may he ordered, such as complement level, sedimentation rates, and
tests that have names like addresses on E-mail: IMMOO6.JPG, IMMOO7.JKPG,
IMMOlO.JPG, etc.
In 1982 the American College of Rheumatology issued the criteria for
establishing a diagnosis of Systemic Lupus Erythematosus. Officially, to be
diagnosed with SLE a patient must have four of the following eleven criteria,
though not necessarily at the same time:
1. Butterfly (Malar) rash
2. Discoid lesions, the reddish, raised patches that leave scars. If this is
the only symptom, the diagnosis is discoid lupus rather than SLE.
3. Photosensitivity, specifically, a rash following exposure to sunlight.
4. Ulcerative sores in the mouth.
5. Arthritis with joint pain, tenderness, and swelling.
6. Evidence of either pleuritis or pericarditis: inflammation of the
membranes lining the chest cavity or surrounding the heart.
7. Evidence of renal or kidney disorder.
8. Signs of a neurologic disorder: seizures, psychosis, or acute loss of
memory, occurring without any other explanation such as drug toxicity or injury.
9. Hematologic abnormalities: specific deficits in various types of blood
cells.
10. Immunologic disorders: false-positive reaction to the test for syphilis,
positive LE cell test, presence of anti-DNA or anti-SM antibodies. Any one of
these constitutes an immunologic disorder.
11. Abnormal level of antinuclear antibodies.
To prepare for your second medical visit, in which you will learn the results
of your laboratory work, you should update your list of symptoms and include
changes you've experienced in the symptoms, reactions to the medicines you were
given, and all of your questions. You should be feeling much better, because at
your first visit your doctor will have prescribed medication for the relief of
your symptoms.
When you are faced with a potentially serious disease, or when you are feeling
very ill, it's hard to concentrate on what a physician is saying. For that
reason, it is a good idea to take a friend with you for this important second
visit, so that both of you can understand what is being said. It is also a good
idea to bring a tape recorder. The two, a friend and a tape recorder, can prove
to be invaluable.
Your physician will want to know if your medication has been effective, and if
you have had any side effects. She'll tell you the results of your laboratory
tests. Perhaps she will order more tests.
Do not pretend to understand your doctor when she uses words that are
unfamiliar to you. Ask her what these new words mean. Ask her to use words that
you understand. Do not let yourself be intimidated by your own lack of
knowledge or your fears of doctors or diseases. If you don't have a tape
recorder, write down the laboratory results and the physician's explanation of
them. Ask, "And how would I look this up at the library?" Explain that you want
to read about your illness. Ask, "Does everyone call this medicine and this
disease by these names, or are there other names that lay persons use?" It is
important that your physician listen to you, believe you, and address each of
your concerns.
If your doctor cannot establish a diagnosis of lupus according to the accepted
eleven criteria, she may continue your medication and simply wait to see what
develops. She may say you have "a connective tissue disorder," which is a very
general term for what way or may not be lupus. That is, of course, frustrating
for you, but often symptoms do not point clearly to a diagnosis. Although it is
natural to want immediate answers, sometimes they aren't forthcoming, because
the tests are not always definitive.
Physicians don't want to label your illness prematurely, treat you for an
illness you don't have, or subject you to a false diagnosis that may remain
attached to your medical record forever.
Whatever your diagnosis, you may choose to get a second opinion. If your
physician is not a specialist in lupus, ask for a consultation with a
specialist.
Your local lupus society has a list of physicians who specialize in the
treatment of lupus. Get the list, and then ask health professionals in your
area, such as nurses or medical social workers, "What doctor would you want for
your loved ones, if one of them had the symptoms I have?"
You want a rheumatologist to go over the test results, because rheumatologists
specialize in treating patients with lupus. Afterwards, you may continue with
that specialist, or seek a different one. If you have severe kidney
involvement, you will be referred to a nephrologist, In addition, you may need
to see other physicians for specific problems. With neurological disorders
you'll be referred to a psychiatrist or neurologist. If you have mouth or jaw
pain, see a dentist with experience in treating lupus, because lupus patients'
jaws sometimes develop changes that cause great pain until treated by a dentist
who knows about this problem.
A few lupus patients develop vasculitis, an inflamation of blood vessels. This
can occur in your eyes, kidneys, brain, abdomen, and almost anywhere in your
body. If you have eye problems, vasculitis, or are taking the drug Plaquenil
you need to regularly consult an opthalmologist who can visualize "cotton wool
spots" on the back of your eyes which are caused by vasculitis.
You have a right to the best medical care you can find physicians have chosen
their vocation because they want to help people live well. They want to save
lives. Basically, they care deeply about their patients' and they have spent
hard years learning to do their jobs to the best of their abilities. With a
chronic disease, you want to have confidence in your physician, and know that
the two of you can work well together. It's going to be a long, difficult road,
which is infinitely easier when you travel it with someone you trust.
In the following fourteen chapters, women and men with lupus tell their own
unique stories of their struggles with both the symptoms and the disease itself.
* In the past almost all physicians were men. Male pronouns were used when
referring non-specifically to men or women. Now many physicians are female, and
in this book female pronouns will be used to designate male and female
physicians.
Apa Penyakit Lupus Itu?
* Bukan Penyakit Keturunan
Seabad lalu, penyebab penyakit ini diperkirakan adalah karena faktor keturunan,
selain faktor hormon dan lingkungan (seperti stres, sinar matahari, infeksi,
makanan dan obat-obatan). Namun, kini disimpulkan para ahli bahwa penyebab dari
penyakit Lupus adalah bukan merupakan penyakit keturunan!
Penyakit Lupus tidak diturunkan, hanya 5-10% pasien Lupus yang diturunkan dalam
keluarga. Sebagian besar (90%) pasien Lupus tidak mempunyai saudara ataupun
orangtua yang juga sakit Lupus.
Lebih Banyak Dialami Perempuan
Penyakit Lupus menyerang hampir 90% perempuan. Kini tercatat kurang lebih
sekitar 5 juta pasien Lupus tersebar di seluruh dunia dan setiap tahunnya
bertambah sebanyak 100.000 pasien baru.
Data di Amerika menunjukkan angka kejadian penyakit Lupus Ras Asia lebih tinggi
dibandingkan ras Kaukasia. Di Indonesia jumlah penderita Lupus yang tercatat
sebagai anggota YLI 789 orang, tetapi bila kita melakukan pendataan lebih
seksama jumlah pasien Lupus di Indonesia akan lebih besar dari Amerika (
1.500.000 orang).
Siapa saja yang bisa terserang Lupus? Lupus seringkali disebut penyakit
wanita meskipun faktanya laki- laki juga ada yang terkena. Lupus dapat
diturunkan pada semua umur, namun sebagian besar pasien ditemukan pada
perempuan usia produktif. Sembilan dari 10 orang dengan Lupus (Odapus) adalah
wanita. Alasan mengapa Lupus lebih banyak menyerang kaum perempuan produktif?
Hingga saat ini belum diketahui pasti apa penyebabnya. Jumlah terbesar
penderitanya dialami oleh perempuan di usia belasan tahun (yang sudah
mendapatkan menstruasi)
Selain itu penyakit Lupus juga berhubungan dengan hormon estrogen yang banyak
di produksi oleh perempuan. Tapi, secara pasti, penyakit Lupus ini (jarang)
ditemukan pada anak-anak usia balita atau wanita menopouse. Pada perempuan
usia subur dengan laki-laki perbandingannya adalah : 10 : 1 dan perbandingan
ini akan mengecil pada kelompok perempuan usia menopuse.
Karena dialami oleh perempuan di usia subur, penyakit Lupus ini dapat menganggu
kehamilan (terjadinya abortus, gangguan perkembangan janin/bayi mati sebelum
dilahirkan). Terdapat peningkatan risiko dari aktivitas penyakit selama 3 atau
4 minggu setelah kehamilan.. Ada pula penyakit Lupus yang baru dijumpai pada
saat kehamilan atau setelah melahirkan. Tetapi hal ini bukan berarti kaum
perempuan harus ketakutan untuk mendapatkan keturunan. Kesuburan perempuan
dengan Lupus tidak berpengaruh edngan penyakitnya. Data YLI menyebutkan banyak
Odapus yang bisa memperoleh keturunan dengan keadaan bayi dalam kondisi sehat.
Bagi kaum perempuan yang mengalami Lupus diperbolehkan untuk hamil, memperoleh
keturunan, di bawah pengawasan dokter secara penuh. Para dokter umumnya akan
menganjurkan bagi pasien Lupus yang berat, apabila sudah memiliki anak
sebaiknya tidak memiliki anak lagi selama masa kehamilan harus selalu kontrol
secara teratur ke dokter ahli pemerhati Lupus untuk Lupusnya dan dokter
kandungan untuk kehamilannya.
Masih Misterius
Penyakit Lupus sampai sekarang ini masih misterius. Walaupun penyakit ini
sudah terdeteksi selama 150 tahun lebih tapi hingga kini belum diketahui secara
pasti apa penyebabnya dan cara penyembuhan secara tuntas. Selama ini upaya yang
dilakukan para tim medis hanya sebatas untuk menekan mengurangi gejala
lupus . Bahkan rumah sakit yang khusus menangani penyakit ini belum tersedia-
masih sebatas rumah sakit atas rujukan dokter setempat. Sehingga Lupus dianggap
sebagai penyakit autoimmune disease yang paling menonjol beberapa tahun
belakangan ini.
Definisi Lupus
Lupus adalah penyakit kronik / menahun, merupakan penyakit daya tahan tubuh
atau disebut penyakit autoimun artinya kekebalan / perlindungan (immune)
terhadap jaringan tubuh sendiri ( auto ). Pada manusia normal, sistim kekebalan
tubuh akan membuat antibodi yang berfungsi untuk melindungi tubuh dari berbagai
macam virus, kuman, atau bakteri dan benda benda asing lainnya.Benda benda
asing ini disebut antigen. Pada penyakit autoimune seperti Lupus, sisitim
kekebalan kehilangan kemampuan untuk melihat perbedaan antara substansi asing
dengan sel dan jaringan tubuh sendiri. Pada Lupus produksi antibodi ini
terlalu berlebihan. Sayangnya saking berlebihan antibodi ini tidak menyerang
pada kuman atau musuhnya tetapi justru menyerang sistim kekebalan sel dan
jaringan tubuh sendiri. Antibodi seperti ini disebut auto-antibodi bereaksi
dengan antigen sendiri membentuk kompleks imun .Kompleks imun yang terdapat
dalam jaringan dapat menyebabkan peradangan, luka pada jaringanan rasa sakit.
Sistim kekebalan ini tidak mengenal mana teman mana lawan,.
Lupus dikatakan great imitator(peniru yang ulung) / mimikri (menyerupai
penyakit lain), bukan satu jenis penyakit, amat heterogen. Gejala Lupus dapat
terjadi dari ringan sampai berat. Gejala pada sebagian Odapus cukup ringan.
Sedangkan bagi yang lainnya, lupus bisa menjadi masalah serius dan dapat
berakibat fatal bahkan mengancam kelangsungan hidupnya
Penyebab Penyakit Lupus
Penyebab munculnya penyakit Lupus ini hingga kini masih belum diketahui secara
pasti apa penyebabnya. Namun yang pasti gejala gejala umum dari penyakit
lupus ini bervariasi, mulai dari gejala yang ringan (hanya mengenai bagian
kulit dan persendian) sampai pada gejala serius yang dapat mengancam jiwa
manusia jika lupus menyerang organ vital. Karena itu kenalilah semenjak dini
bila anda merasakan adanya keluhan dari gejala gejala umum yang terdapat
penyakit lupus.
Perlu diingat bahwa Lupus adalah Bukan penyakit menular, bukan penyakit AIDS,
bukan penyakit kelamin serta bukan penyakit kanker. Lupus adalah penyakit
kelainan antibodi .
Pada penyakit Lupus :
n Sistem kekebalan tubuh (zat antibodi-nya) justru menyerang diri sendiri dan
menjadi perusak sehingga menimbulkan gejala Lupus. Dengan kata lain, penyakit
Lupus ini disebut sebagai autoimun = sistem kekebalan tubuh tidak mengenal mana
teman atau lawan. ( Kelebihan antibodi)
* Bukan jenis penyakit virus, kuman atau bakteri.
* Faktor penyebab munculnya gejala Lupus hingga kini belum diketahui dengan
pasti.
* Lebih banyak perempuan dibandingkan dengan laki-laki.
* Sebagian besar ditemukan pada perempuan usia produktif.
* Apabila terjadi infeksi, masih bisa diobati.
* Bukan jenis penyakit menular.
Jenis-Jenis Penyakit Lupus
Jenis-jenis penyakit Lupus ada 3 yaitu :
1. Discoid Lupus organ tubuh yang terkena hanya bagian kulit!
Dapat dikenali dari ruam yang muncul dimuka, leher dan kulit kepala, ruam di
sekujur tubuh, berwarna kemerahan, bersisik, kadang gatal. Pada Lupus
jenis ini dapat didiagnosa dengan menguji biopsi dari ruam. Pada discoid lupus
hasil biopsi akan terlihat ketidak normalan yang ditemukan pada kulit tanpa
ruam. Dan, jenis ini pada umumnya tidak melibatkan organ-organ tubuh bagian
dalam. Oleh karena itu, tes ANA (pemeriksaan darah yang digunakan untuk
mengetahui keberadaan sistemik lupus hasilnya bisa saja bersifat negatif pada
pasien pengidap discoid lupus. Akan tetapi pada sebagian besar pasien dengan
jenis discoid lupus hasil pemeriksaan ANA-nya positif, tetapi masih dalam
tingkatan atau titer yang rendah.
10% pasien Discoid dapat menjadi SLE.
2. Drug-Induced Lupus lupus yang timbul akibat efek samping obat.
Pada lupus jenis ini baru muncul setelah odapus menggunakan jenis obat tertentu
dalam jangka waktu yang panjang. Ada 38 jenis obat yang dapat menyebabkan Drug
Induced. Salah satu contoh faktor yang mempengaruhi DIL adalah akibat
penggunaan obat-obatan hydralazine( untuk mengobati darah tinggi ) dan
procainamide ( untuk mengobati detak jantung yang tidak teratur ). Tapi tidak
semua penderita yang menggunakan obat-obatan ini akan berkembang menjadi drug
induced Lupus, hanya sekitar 4% orang-orang yang menggunakan obat-obatan
tersebut yang akan berkembang menjadi drug induced dan gejala akan mereda
apabila obat-obatan tersebut dihentikan.Gejala dari drug-induced lupus (DIL)
serupa dengan sistemik lupus. Umumnya gejala akan hilang dalam jangka waktu 6
bulan setelah obat dihentikan. Pemeriksaan Tes AntiNuclear Antibody ( ANA )
dapat tetap positif.
3. Sistemic Lupus Erythematosus.
Lupus ini lebih berat dibandingkan dengan discoid lupus karena gejalanya
menyerang banyak organ tubuh atau sistim tubuh pasien Lupus. Pada sebagian
orang hanya kulit dan sendinya saja yang terkena , akan tetapi pada sebagian
pasien lupus lainnya menyerang organ vital organ: Jantung Paru, Ginjal,
Syaraf, Otak.
Namun perlu dicatat : Umumnya tidak ditemukan adanya dua orang odapus terkena
Sistemik lupus dengan gejala yang persis sama.
Lupus sistemik bisa masuk periode dimana, jika ada, gejalanya membaik
(remisi), dan dilain waktu penyakit dapat menjadi lebih aktif ( flare up
).Gejala dari yang paling ringan sampai yang paling berat.
Faktor Penyebab Lupus
Faktor penyebab terserangnya seseorang terhadap penyakit Lupus hingga kini
belum diketahui, tetapi pengaruh lingkungan dan faktor genetik, hormon diduga
sebagai penyebabnya.
Faktor Genetik : Tidak diketahui gen atau gen gen apa yang menjadi penyebab
penyakit tersebut, 10% dalam keluarga Lupus mempunyai keluarga dekat ( orang
tua atau kaka adik ) yang juga menderita lupus, 5% bayi yang dilahirkan dari
penderita lupus terkena lupus juga, bila kembar identik, kemungkinan yang
terkena Lupus hanya salah satu dari kembar tersebut.
Faktor lingkungan sangat berperan sebagai pemicu Lupus, misalnya : infeksi,
stress, makanan, antibiotik (khususnya kelompok sulfa dan penisilin), cahaya
ultra violet (matahari) dan penggunaan obat obat tertentu.
Faktor hormon, dapat menjelaskan mengapa kaum perempuan lebih sering terkena
penyakit lupus dibandingkan dengan laki-laki. Meningkatnya angka pertumbuhan
penyakit Lupus sebelum periode menstruasi atau selama masa kehamilan mendukung
keyakinan bahwa hormon, khususnya ekstrogen menjadi penyebab pencetus penyakit
Lupus. Akan tetapi hingga kini belum diketahui jenis hormon apa yang menjadi
penyebab besarnya prevalensi lupus pada perempuan pada periode tertentu yang
menyebabkan meningkatnya gejala Lupus masih belum diketahui.
Lupus sering kali disebut sebagai penyakit perempuan, meskipun faktanya ada
juga laki-laki yang terkena Lupus. Lupus dapat terjadi pada semua usia anak,
dewasa.
Walaupun terjadinya penyakit Lupus10-15 kali lebih banyak terjadi pada
perempuan usia produktif dibandingkan dengan laki-laki. Gejala penyakit Lupus
pada perempuan dan laki-laki pada umumnya adalah sama. Tetapi risiko timbulnya
Lupus pada perempuan dewasa usia subur 8 kali lebih tinggi bila dibandingkan
dengan laki-laki dewasa. Beberapa data menunjukkan insiden penyakit Lupus ras
Asia lebih tinggi dibandingkan ras Kaukasia.
Faktor sinar matahari adalah salah satu kondisi yang dapat memperburuk gejala
Lupus. Diduga oleh para dokter bahwa sinar matahari memiliki banyak ekstrogen
sehingga mempermudah terjadinya reaksi autoimmune. Tetapi bukan berarti bahwa
penderita hanya bisa keluar pada malam hari. Pasien Lupus bisa saja keluar
rumah sebelum pukul 09.00 atau sesudah pukul 16.00 dan disarankan agar memakai
krim pelindung dari sengatan matahari. Teriknya sinar matahari di negara
tropis seperti Indonesia, merupakan faktor pencetus kekambuhan bagi para pasien
yang peka terhadap sinar matahari dapat menimbulkan bercak-bercak kemerahan di
bagian muka.kepekaan terhadap sinar matahari (photosensitivity) sebagai reaksi
kulit yang tidak normal terhadap sinar matahari.
Empat puluh hingga 60% pasien SLE adalah rentan terhadap photosensitive.
Terkena cahaya matahari secara berlebihan diperkirakan sebagai faktor pemicu
serangan dari penyakit SLE dan memperburuk cutaneous (discoid) lupus.
Pasien Lupus, harus menyadari bahwa sinar matahari adalah musuh bagi mereka.
Gaya hidup yang sensitif akan memperkecil tekena dari sengatan sinar UV yang
berlebihan. Aktivitas di luar gedung sebaiknya diselesaikan sebelum jam 10 pagi
dan setelah jam 2 siang saat cahaya UV kurang begitu menyengat. Pasien Lupus
sebaiknya tidak berjemur atau berpanas-panas dan tidak membuat kulitnya menjadi
coklat terbakar sinar matahari.
Karena itu gunakan pelindungmatahari yang dapat menghambat cahaya matahari
(sunblock) dan yang menahancahaya matahari (sunscreens). Penghambatcahaya
matahari (sunblock) .
Regards,
Care For Lupus, Your Craing saves Lives
Semoga membantu.
Salam
Donny Harimurti
Note Mod:
Saya merubah ke link yg lebih informative lengkap dg berbagai kendala lupus
dibandingkan yg di postkan oleh Hari yg disadurkan dari Care For Lupus, Your
Craing saves Lives. Sallam,
-----Original Message-----
From: dokter_umum@yahoogroups.com [mailto:dokter_u...@yahoogroups.com]
On Behalf Of Yenny Meiliany
Sent: Monday, August 09, 2010 11:40 AM
To: dokter_umum@yahoogroups.com
Subject: [Dokter Umum] PENYAKIT LUPUS
Selamat pagi rekan rekan sekalian..
Saya ingin menanyakan mengenai penyakit lupus.. apa itu penyakit
lupus..??
apakah bisa disembuhkan? Jika bisa, obat apa yg dapat dikonsumsi agar
bisa
sembuh..??
Terima kasih.
:BCA:
[Non-text portions of this message have been removed]
[Non-text portions of this message have been removed]
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