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Am I ready?

11:27 PM with 1 comments »

I just want think positively and hopes for the best for my brother. But undeniable worries and sadness still in my heart.

May be i opt to be ready for the worse? Nau'zubillah. NO-NO! I won't think anything could happenened to him. I'm going to see him and doa him the longest healthy and happy life ever.

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Im going to visit my brother today. Hopefully he have been recovering from his kidney problems.

I'll post some picture and some words of him here later. Please support my brother.

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Living with Lupus

26. I was diagnosed with systemic lupus. Are there any do's or don'ts with regard to:

Diet - There is no such thing as a lupus diet. People with lupus should consider following a diet such as the American Heart Association's diet or the American Cancer Society diet. These are both well-researched diets that have common components, they are low in fat, low in sodium, high in fiber, low in refined sugars. They are also balanced and include appropriate amounts of all the different food groups. If you find, however, that certain foods seem to aggravate or consistently cause a flare-up of your lupus symptoms, you should certainly avoid eating those foods.

Alfalfa sprouts are in the legume family and contain an amino acid, L-canavanine. It can stimulate the immune system in people with lupus and increase inflammation. Other legumes are safe to eat as they have a much lower concentration of L-canavanine compared to alfalfa sprouts. Check labels on health food packaging as alfalfa may also be found as an ingredient in food products.
See: Lupus: Basics for Better Living

Vitamins - In general, a multi-vitamin is reasonable, but excess vitamins can be potentially dangerous and should be avoided.

Exercise - Exercise is to be encouraged in people with lupus, particularly during a time when lupus symptoms are not pronounced. Walking, swimming, bicycling and other aerobic activities are good. But keep in mind that you want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help you function better and improve fatigue and your sense of well being.

Resources:
National Institute of Arthritis and Musculoskeletal and Skin Diseases: "Patient Information Sheet #3, Exercise and Lupus"
"Questions and Answers about Arthritis and Exercise"
American College of Rheumatology:
"A Fact Sheet on Exercise and Arthritis"

Fatigue - When your lupus is active, you very often will suffer with fatigue. It is important to recognize this as a signal that your body needs to rest. It is essential that during a time of flare you get sufficient rest. This may include naps during the day, modifying your schedule as well as restructuring your priorities. Adjusting to fatigue often requires that you learn how to pace yourself in order to accomplish the things you want to accomplish throughout a day. Regular aerobic exercise that achieves enhanced physical conditioning, usually helps fatigue. Avoid strenuous exercise if you have fever or other signs of VERY active disease.

Resource:
National Institute of Arthritis Musculoskeletal and Skin Diseases (NIAMS) "Preventing Fatigue Due to Lupus"

Sleep - Get plenty of it, but keep in mind that when you are coming out of a flare you do need to gradually resume your normal activities slowly over a period of time. This may require naps during the day-a brief cat nap can be of tremendous help. It's important to get enough sleep at night and to pace yourself during the day so you don't exhaust yourself.

Medications - Be sure and take your medications as prescribed by your doctor. If you develop any side effects make sure you let your doctor know what they are. Make it a point to understand what the medication you take is supposed to do so you will be able to recognize if it is indeed working. Also, ask how long before you should see the effects of the medication and if you find it's not working within the time frame, let your doctor know.

Work schedule -The type of work schedule someone with lupus can accommodate is variable. Many people with lupus are able to work a full-time job, others find they have to cut back to part-time. Some people find they are unable to work and some apply for and receive disability.

27. Flares

How can I tell if my lupus is active?

When a lupus flare occurs, people will usually notice a return of the symptoms they experienced previously, but sometimes they will notice new symptoms. These may include, but are not limited to:

  • Fever
  • Swollen joints
  • Increase in fatigue
  • Rashes
  • Sores or ulcers in the mouth or nose
  • A temperature over 100 degrees, not due to an infection, is often a helpful sign in identifying a flare.

    When should I call the Doctor?

    You should call the doctor about any change in symptoms or worsening of your lupus as soon as possible. You should also be aware that there are certain symptoms that may require that you see your doctor immediately. These symptoms or signs include the following:

    • Blood in your stool or vomit -you should call your doctor and let him/her know immediately
    • Severe abdominal pain
    • Chest pain
    • Seizures
    • New onset of a fever or if your fever is much higher than it usually is
    • Excess bruising or bleeding anywhere on your body
    • Confusion or mood changes
    • A combination of symptoms such as severe headache with neck stiffness and fever. This combination could be serious and you need to let your doctor know immediately.

    There are other reasons why you should call your doctor. For example, if the doctor has put you on a new medication and you've been taking it as prescribed, and for the period of time prescribed and your symptoms are no better or they are worse, you need to let the doctor know.

    How long will a flare last? How long will a remission last?

    There is no way of predicting how long a flare will last when it comes, nor is there any way of predicting how long a remission will last when it comes. It is frequently said about lupus that the only thing that is predictable about lupus is it's unpredictability. So we have no way of forecasting how long a flare will last or how long a remission will last. Sometimes changes in symptoms or lab tests predict future changes.

    I've had lupus for 2 years and haven't had a remission yet. Is this possible?

    Yes. Lupus takes a highly variable course. Some people will have a course where their lupus flares-up and then simmers down and goes into remission. On the other hand, some have a more chronic (long-lasting) course where they have a chronic state of flare and have symptoms day-in and day-out.

    28. What can I expect in the future? Will I be able to have a family?

    Unless there is moderate to severe organ involvement or if a person must take immunosuppressive/immunomodulating medications that would place the mother at risk, there is no absolute reason why a person with lupus should not get pregnant. You must be aware, however, that there is an increased risk of disease activity either during or three to four weeks after pregnancy and, therefore, all women with lupus who are pregnant must be closely monitored by an obstetrician who is thoroughly familiar with high risk pregnancy as well as their lupus doctor. Statistically, 50% of all lupus pregnancies are completely normal, 25% will deliver normal babies prematurely and the remaining 25% will experience either a miscarriage or a fetal death.

    Years ago women with lupus were advised not to have children. However, today with the advances in diagnosis and treatment of lupus, unless there is moderate to severe organ involvement, there is no absolute reason why a person with lupus should not get pregnant.
    See: Pregnancy and Lupus

    Will I be able to continue working full-time?

    Many people who have lupus are able to continue working full-time. However, since lupus affects people to varying degrees there is no real way of predicting what your course of lupus will bring in the future. Some find they have to cut back to part-time or try modifications of their work environment or schedule, some find they have to take a leave of absence for a period of time, others may find their lupus activity is such that they are unable to continue with working, and some may go on disability.

    Will I live long enough to see my children grow up?

    The majority of people living with lupus today, in fact 80-90% of them, can expect to live a normal lifespan.

    Will I become crippled and end up in a wheelchair?

    People are frequently concerned that the arthritis associated with lupus will result in crippling deformities. Lupus arthritis generally does not cause deformities of the joints. Occasionally, avascular necrosis of bone, related to steroids and lupus, may occur and require total hip or knee replacement surgery.
    Reference: see brochure, Joint and Muscle Pain in Lupus

    29. Is there anything I can do to alleviate the pain when the pills don't seem to work and I can't get in to see the doctor for a few days?

    Some people find relief from heat, some people find relief from cold. Others find that if they can find a distraction to decrease their awareness of pain, this is beneficial.
    See: LUPUS: Basics for Better Living
    ; "Control Your Pain: 144 Sure-Fire Strategies for Reducing the Pain of Lupus," by Robert H. Phillips, Ph.D. Available through the LFA Store.

    30. I have heard that dental fillings may trigger lupus. Is there anything to this?

    At the present time, we do not have any scientific data that indicates that dental fillings may act as a trigger of lupus. In fact, it is highly unlikely that dental fillings aggravate or cause SLE.

    31. I have heard that hair dyes may trigger flares in lupus. Does this mean I should stop dying my hair?

    One study indicated an association between the use of hair dyes and lupus symptoms, but subsequent studies found no association and no recent evidence has been reported. The initial study findings are of uncertain significance and most physicians do not feel that hair dye is risky for people with lupus.

    32. Can lupus cause memory problems?

    At some point during the course of their lupus, up to 50% of lupus patients describe feelings of confusion, fatigue, memory impairment, and difficulty expressing their thoughts. This collection of symptoms is called "cognitive dysfunction" and is found in people with mild to moderately active SLE.
    See: Systemic Lupus and the Nervous System

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    How Lupus Affects the Body

    Lupus causes inflammation and other damage in one or more organs or organ systems. For some people this damage may be limited to skin and joints. In other people, the lungs, kidneys, blood, brain, or other organs and tissues also may be affected.

    Systemic lupus can be mild or severe and sometimes fatal. Some of the more serious complications which involve major organ systems are:

    • inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood. This can be so damaging that dialysis or kidney transplant may be needed.
    • an increase in blood pressure in the lungs (pulmonary hypertension)
    • inflammation of the heart muscle (myocarditis), which can lead to congestive heart failure
    • hardening of the arteries (atherosclerotic heart disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack
    • involvement of the nervous central system and brain (CNS lupus), which can cause stroke, memory problems, confusion, and headaches.
    • inflammation of the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes, and psychosis.

    Learn More:

    Blood Disorders
    Cardiopulmonary Disease
    Drug-Induced Lupus
    Heart Disease among Women with Lupus
    Joint and Muscle Pain
    Kidney Disease
    Nervous System
    Osteoporosis
    Overlap with Other Diseases
    Sjögren's Syndrome and Lupus
    Vasculitis

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    Laboratory Tests

    Symptoms, Signs and Tests

    Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. Diagnosis is usually made by a careful review of three factors:

    • the individual's entire medical history
    • an analysis of the results obtained in routine laboratory tests and
    • some specialized tests related to immune status.

    To make a diagnosis of SLE, an individual must show clinical evidence of a multi-system disease (i.e. has shown abnormalities in several different organ systems). Typical symptoms or signs that might lead to suspicion of SLE are:

    Skin: Butterfly rash across the cheeks; ulcers in the mouth; hair loss.
    Joints: Pain; redness, swelling.
    Kidney: Abnormal urinalysis suggesting kidney disease.
    Lining membranes: Pleurisy (inflammation of the lining of the lung); pericarditis (inflammation of the heart lining); and/or peritonitis (inflammation around the abdomen). Taken together, these types of inflammation are known as polyserositis.
    Blood: Hemolytic anemia (the red cells are destroyed by autoantibodies); leukopenia (low white blood cell count); thrombocytopenia (low number of platelets).
    Lungs: Infiltrates (shadowy areas seen on a chest x-ray) that come and go
    Nervous system: Convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular control or strength.

    If an individual has several of these symptoms, the physician will then usually order a series of tests to examine how well the individual's immune system is functioning. In general, physicians look for evidence of autoantibodies. Although there is no one test that can definitely say whether or not a person has lupus, there are many laboratory tests which aid the physician in making a lupus diagnosis.

    Routine clinical tests which suggest that the person has an active systemic disease include:

    • sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause
    • serum protein electrophoresis which may reveal increased gammaglobulin and decreased albumin
    • routine blood counts which may reveal anemia and low platelet and white cell counts
    • routine chemistry panels which may reveal
      • kidney involvement by increases in serum blood urea nitrogen and creatinine
      • abnormalities of liver function tests
      • increased muscle enzymes (such as CPK) if muscle involvement is present.

    These kinds of abnormalities alert the doctor to the presence of a systemic disease with multiple organ involvement.

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    Diagnosis

    Because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go, lupus can be difficult to diagnose. Diagnosis is usually made by a careful review of a person's entire medical history coupled with an analysis of the results obtained in routine laboratory tests and some specialized tests related to immune status.

    Currently, there is no single laboratory test that can determine whether a person has lupus or not. To assist the physician in the diagnosis of lupus, the American College of Rheumatology (ACR) in 1982 issued a list of 11 symptoms or signs that help distinguish lupus from other diseases. A person should have four or more of these symptoms to suspect lupus. The symptoms do not all have to occur at the same time.


    The Eleven Criteria Used for the Diagnosis of Lupus

    Criterion

    Definition

    Malar Rash

    Rash over the cheeks

    Discoid Rash

    Red raised patches

    Photosensitivity

    Reaction to sunlight, resulting in the development of or increase in skin rash

    Oral Ulcers

    Ulcers in the nose or mouth, usually painless

    Arthritis

    Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

    Serositis

    Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

    Renal Disorder

    Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

    Neurologic
    Disorder

    Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

    Hematologic
    Disorder

    Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

    Antinuclear
    Antibody

    Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

    Immunologic
    Disorder

    Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).

    Adapted from: Tan, E.M., et. al. The 1982 Revised Criteria for the Classification of SLE. Arth Rheum 25: 1271-1277.

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    Could It be Lupus?

    If you have had any symptoms like these, especially if you have had several, the Lupus Foundation of America suggests that you talk to your doctor about lupus. Early diagnosis and proper medical care are the best ways to manage lupus.

    For free information about lupus, call the Lupus Foundation of America at 1-888-38-LUPUS.

    Brain And Nervous System

    • Have you ever had a seizure or unexplained confusion that lasts for more than an hour?
    • Have you had a fever over 100º F / 38º C for more than a few days?

    Heart or Lungs

    • Have you felt chest pain while taking deep breaths?

    Kidneys

    • Have you ever been told that you had protein in your urine?
    • Have you ever had swelling in your legs and ankles on both sides at the same time?

    Blood and Circulatory System

    • Have you ever been told you have anemia, a low white cell count, or a low platelet count?
    • Have your fingers and/or toes ever become red or blue, or felt numb or painful?
    • Have you ever had a blood clot, heart attack, stroke, or miscarriage?

    Eyes, Nose, And Mouth

    • Have you ever had sores in your mouth or nose that lasted more than five days?

    Muscles and Joints

    • Have you ever had achy, painful and/or swollen joints for more than three months?
    • Have you ever felt extreme fatigue or weakness for days or weeks, even after plenty of sleep?

    Skin

    • Have you ever had sores on your skin that would not heal?
    • Has being in the sun ever given you a rash, but it is not a sunburn?
    • Have you ever had redness or rash in the shape of a butterfly across your nose and cheeks?
    • Have you ever had sudden, unexplained hair loss?

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    Signs and Symptoms of Lupus Flare

    Be aware of one or more of these symptoms:
    • Persistent fatigue out of proportion with what you would usually expect
    • Persistent weakness
    • Aching all over
    • Fever, which may be slight to high (you can check your temperature yourself)
    • Persistent loss of appetite
    • Involuntary weight loss
    • Increasing hair loss
    • Recurring nose bleeds
    • Sore on the roof of the mouth, which burns with spicy foods
    • Unexplained skin rash anywhere on the body
    • Hives
    • Sores on the skin
    • Painful joint(s)
    • Swollen joint(s)
    • Stiffness of the joints when waking up in the morning
    • Chest pain which increases with breathing
    • Shortness of breath
    • Coughing up blood
    • Persistent unusual headache
    • Nausea or vomiting
    • Recurring or persistent abdominal pain
    • Persistent, increasing swelling of the feet and legs
    • Puffy eyelids
    • Blood in the urine

    Lupus is often a self-repetitive disease: watch for a recurrence of the symptoms that you experienced when your disease started.

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    Symptoms

    Although lupus can affect any part of the body, most people experience symptoms in only a few organs. The most common symptoms of people with lupus are listed below. Occurrences of particular symptoms happening are listed as percentages.

    • Achy joints / arthralgia (95 percent)
    • Fever of more than 100 degrees F / 38 degrees C (90 percent)
    • Arthritis / swollen joints (90 percent)
    • Prolonged or extreme fatigue (81 percent)
    • Skin Rashes (74 percent)
    • Anemia (71 percent)
    • Kidney Involvement (50 percent)
    • Pain in the chest on deep breathing / pleurisy (45 percent)
    • Butterfly-shaped rash across the cheeks and nose (42 percent)
    • Sun or light sensitivity / photosensitivity (30 percent)
    • Hair loss (27 percent)
    • Abnormal blood clotting problems (20 percent)
    • Raynaud's phenomenon / fingers turning white and/or blue in the cold (17 percent)
    • Seizures (15 percent)
    • Mouth or nose ulcers (12 percent)

    If you have several of these symptoms, see your doctor right away.

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    Demographic Information on Lupus

    Cases of Lupus

    • The Lupus Foundation of America estimates that approximate 1.5-million Americans have a form of lupus.
    • Although lupus can strike men and women of all ages, 90% of individuals diagnosed with the disease are women, and 80% of those afflicted with systemic lupus develop it between the ages of 15 and 45.
    • Approximately 70% of lupus cases are systemic. In about 50% of these cases, a major organ will be affected.
    • Discoid lupus (affecting only the skin) accounts for approximately 10% of all cases.
    • In approximately 10% of all lupus cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.
    • 20% of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
    • Only about 5% of the children born to individuals with lupus will develop the illness.
    • Lupus is two to three times more prevalent among people of color, including African Americans, Hispanics/Latinos, Asians, and Native Americans.
    • It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.

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    Lupus can be a very confusing disease, especially if you do not know much about it. If you are not sure where to look on this website, here are a few suggestions to help learn basic facts about lupus.

    Causes

    The cause(s) of lupus is currently unknown, but there are environmental and genetic factors involved. Some environmental factors which may trigger the disease include infections, antibiotics (especially those in the sulfa and penicillin groups), ultraviolet light, extreme stress, certain drugs, and hormones.

    Scientists believe there is a genetic predisposition to the disease, as lupus is known to occur within families. However, there is no known gene or genes which are thought to cause the illness. There are recent discoveries of a gene on chromosome 1 which is associated with lupus in certain families. Previously, genes on chromosome 6 called "immune response genes" were also associated with the disease. Only 10 percent of lupus patients will have a close relative (parent or sibling) who already has or may develop lupus. Statistics show that only about five percent of the children born to individuals with lupus will develop the illness.

    Lupus is often called a "woman's disease" despite the fact that many men are affected. Lupus can occur at any age, and in either sex, although it occurs 10-15 times more frequently among adult females than among adult males after puberty or after the emergence into sexual maturity. The symptoms of the disease are the same in men and women. People of African, American Indian, and Asian origin are thought to develop the disease more frequently than Caucasian women. The reasons for this ethnic selection are not clear.

    Hormonal factors may explain why lupus occurs more frequently in females than in males. The increase of disease symptoms before menstrual periods and/or during pregnancy support the belief that hormones, particularly estrogen, may somewhat regulate the way the disease progresses. However, the exact reason for the greater prevalence of lupus in women, and the cyclic increase in symptoms, is unknown.

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    Lupus can be a very confusing disease, especially if you do not know much about it. If you are not sure where to look on this website, here are a few suggestions to help learn basic facts about lupus.

    What is lupus?

    Definition

    Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

    In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body.

    Types

    There are four types of lupus: discoid, systemic, drug-induced and neonatal lupus.

    Discoid (cutaneous) lupus is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body's internal organs. Therefore, the ANA test may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer."

    In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.

    Systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident ("remission") and other times when the disease becomes more active ("flare"). Most often when people mention "lupus," they are referring to the systemic form of the disease.

    Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). Drug induced lupus is more common in men who are given these drugs more often. However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.

    Neonatal lupus is a rare condition acquired from the passage of maternal autoantibodies, specifically anti-Ro/SSA or anti-La/SSB, which can affect the skin, heart and blood of the fetus and newborn. It is associated with a rash that appears within the first several weeks of life and may persist for about six months before disappearing. Congenital heart block is much less common than the skin rash. Neonatal lupus is not systemic lupus.



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    Marc C. Hochberg, MD, MPH
    Professor of Medicine, Epidemiology and Preventive Medicine
    University of Maryland School of Medicine, Baltimore, MD.

    A selection from the Lupus Foundation of America Newsletter Article Library
    93-102
    Revised 6/03


    The history of lupus erythematosus (LE) has been reviewed in two of the major textbooks on this disease1,2 and was the subject of an article in a journal in 1983.3 This article concentrates on developments in the present century which have greatly expanded our knowledge about the pathophysiology, clinical-laboratory features, and treatment of this disorder.

    The history of lupus can be divided into three periods: the classical period which saw the description of the cutaneous disorder, the neoclassical period which saw the description of the systemic or disseminated manifestations of lupus, and the modern period which was heralded by the discovery of the LE cell in 1948 and is characterized by the scientific advances noted above.

    The history of lupus during the classical period was reviewed by Smith and Cyr in 1988.4 Of note are the derivation of the term lupus and the clinical descriptions of the cutaneous lesions of lupus vulgaris, lupus profundus, discoid lupus, and the photosensitive nature of the malar or butterfly rash.

    The term lupus (Latin for wolf) is attributed to the thirteenth century physician Rogerius who used it to describe erosive facial lesions that were reminiscent of a wolf's bite.1,3 Classical descriptions of the various dermatologic features of lupus were made by Thomas Bateman, a student of the British dermatologist Robert William, in the early nineteenth century; Cazenave, a student of the French dermatologist Laurent Biett, in the mid-nineteenth century; and Moriz Kaposi (born Moriz Kohn), student and son-in-law of the Austrian dermatologist Ferdinand von Hebra, in the late nineteenth century. The lesions now referred to as discoid lupus were described in 1833 by Cazenave under the term "erythema centrifugum," while the butterfly distribution of the facial rash was noted by von Hebra in 1846. The first published illustrations of lupus erythematosus were included in von Hebra's text, Atlas of Skin Diseases, published in 1856.

    The Neoclassical era of the history of lupus began in 1872 when Kaposi first described the systemic nature of the disorder:

    "... experience has shown that lupus erythematosus ... may be attended by altogether more severe pathological changes ... and even dangerous constitutional symptoms may be intimately associated with the process in question, and that death may result from conditions which must be considered to arise from the local malady."5

    Kaposi proposed that there were two types of lupus erythematosus; the discoid form and a disseminated form. Furthermore, he enumerated various symptoms and signs which characterized the disseminated form including (1) subcutaneous nodules, (2) arthritis with synovial hypertrophy of both small and large joints, (3) lymphadenopathy, (4) fever, (5) weight loss, (6) anemia, and (7) central nervous system involvement.5

    The existence of a disseminated or systemic form of lupus was firmly established by the work of Osler in Baltimore6 and Jadassohn in Vienna7 in 1904. Over the next thirty years, pathologic studies documented the existence of nonbacterial verrucous endocarditis (Libman-Sacks disease)8 and wire-loop lesions in patients with glomerulonephritis;9 such observations at the autopsy table lead to the construct of collagen disease proposed by Kemperer and colleagues in 1941.10 This terminology, collagen vascular disease, persists in usage now fifty years after its introduction.

    The sentinel event in the mid 1900s which heralded the modern era was the discovery of the LE cell by Hargraves and colleagues in 1948.11 The investigators observed these cells in the bone marrow of patients with acute disseminated lupus erythematosus and postulated that the cell "... is the result of ... phagocytosis of free nuclear material with a resulting round vacuole containing this partially digested and lysed nuclear material ..." This discovery ushered in the present era of the application of immunology to the study of lupus erythematosus.

    Two other immunologic markers were recognized in the 1950s as being associated with lupus: the biologic false-positive test for syphilis12 and the immunofluorescent test for antinuclear antibodies.13 Moore, working in Baltimore, demonstrated that systemic lupus developed in 7 percent of 148 subjects with chronic false-positive tests for syphilis and that a further 30 percent had symptoms consistent with collagen disease.12 Friou applied the technique of indirect immunofluorescence to demonstrate the presence of antinuclear antibodies in the blood of patients with systemic lupus.13 Subsequently, the recognition of antibodies to deoxyribonucleic acid (DNA)14 and the description of antibodies to extractable nuclear antigens (nuclear ribonucleoprotein (nRNP), Sm, Ro, La), and anticardiolipin antibodies; these autoantibodies are useful in describing clinical subsets and understanding the etiopathogenesis of lupus.

    Two other major advances in the modern era have been the development of animal models of lupus and the recognition of the role of genetic predisposition to the development of lupus. The first animal model of systemic lupus was the F1 hybrid New Zealand Black/New Zealand White mouse.16 This murine model has provided many insights into the immunopathogenesis of autoantibody formation, mechanisms of immunologic tolerance, the development of glomerulonephritis, the role of sex hormones in modulating the curse of disease, and evaluation of treatments including recently developed biologic agents such as anti-CD4 antibodies among others. Other animal models that have been used to study systemic lupus include the BXSB and MRL/lpr mice, and the naturally occurring syndrome of lupus in dogs.17

    The familial occurrence of systemic lupus was first noted by Leonhardt in 1954 and later studies by Arnett and Shulman at Johns Hopkins.18 Subsequently, familial aggregation of lupus, the concordance of lupus in monozygotic twin pairs, and the association of genetic markers with lupus have been described over the past twenty years.19 Presently, molecular biology techniques are being applied to the study of human lympho-cyte antigen (HLA) Class II genes to determine specific amino acid sequences in these cell surface molecules that are involved in antigen presentation to T-helper cells in patients with lupus. These studies have already resulted in the identification of genetic-serologic subsets of systemic lupus that complement the clinico-serologic subsets noted earlier. It is hoped by investigators working in this field that these studies will lead to the identification of etiologic factors(e.g.,viral antigens/proteins) in systemic lupus.

    Finally, no discussion of the history of lupus is complete without a review of the development of therapy. Payne, in 1894, first reported the usefulness of quinine in the treatment of lupus.20 Four years later, the use of salicylates in conjunction with quinine was also noted to be of benefit.21 It was not until the middle of this century that the treatment of systemic lupus was revolutionized by the discovery of the efficacy of adrenocorticotrophic hormone and cortisone by Hench.22 Presently, corticosteroids are the primary therapy for almost all patients with systemic lupus. Antimalarials are used principally for patients with skin and joint involvement on the one hand and cytotoxic/immunosuppressive drugs are used for patients with glomerulonephritis, systemic vasculitis, and other severe life-threatening manifestations on the other.23 Currently, newer biologic agents are being investigated in treating patients with lupus.

    Thus, the history of lupus, although dating back at least to the Middle Ages, has experienced an explosion in this century, especially during the modern era over the past forty years. It is hoped that this growth of new knowledge will allow a better understanding of immunopathogenesis of the disease and the development of more effective treatments.

    REFERENCES

    1. Lahita RG. Introduction. In: Lahita RG, ed. Systemic Lupus Erythematosus. New York: John Wiley and Sons. 1987; 1-3. (Fourth edition published 2004)
    2. Talbott JH. Historical background of discoid and systemic lupus erythematosus. In: Wallace DJ, Dubois EL, eds. Lupus Erythematosus. Philadelphia: Lea & Febiger. 1987; 3-11. (Sixth Edition published 2002)
    3. Boltzer JW. Systemic lupus erythematosus. I. Historical aspects. MD State Med J 1983; 37:439.
    4. Smith CD, Cyr M. The history of lupus erythematosus from Hippocrates to Osler. Rheum Dis Clin North Am 1988; 14:1.
    5. Kaposi MH. Neue Beitrage zur Keantiss des lupus erythematosus. Arch Dermatol Syphilol 1872; 4:36.
    6. Osler W. On the visceral manifestations of the erythema group of skin diseases (third paper). Am J Med Sci 1904; 127:1.
    7. Jadassohn J. Lupus erythematodes. In: Mracek F, ed. Handbach der Hautkrakheiten. Wien: Alfred Holder, 1904; 298-404.
    8. Libmann E. Sacks B. A hitherto undescribed form of volvular and mural endocarditis. Arch Intern Med 1924; 33:701.
    9. Baehr G, Klemperer P, Schifrin A. A diffuse disease of the peripheral circulation usually associated with lupus erythematosus and endocarditis. Trans Assoc Am Physicians 1935; 50:139.
    10. Klemperer P. Pollack AD, Baehr G. Pathology of disseminated lupus erythematosus. Arch Path (Chicago) 1941; 32:569.
    11. Hargraves MM, Richmond H, Morton R. Presentation of two bone marrow elements: The tart cell and the LE cell. Proc Staff Meet Mayo Clin 1948; 23:25.
    12. Moore JE, Lutz WB. The natural history of systemic lupus erythematosus: An approach to its study through chronic biological false positive reactions. J Chron Dis 1955; 2:297.
    13. Friou GJ. Clinical application of lupus serum nucleoprotein reaction using fluorescent antibody technique. J Clin Invest 1957; 36:890.
    14. Deicher HR, Holman HR, Kunkel HG. The precipitin reaction between DNA and a serum factor in SLE. J Exp Med 1959; 109:97.
    15. Tan EM, Kunkel HG. Characteristics of a soluble nuclear antigen precipitating with sera of patients with systemic lupus erythematosus. J Immunol 1966; 96:404.
    16. Bielschowsky M, Helyer BJ, Howie JB. Spontaneous haemolytic anemia in mice of the NZB/BL strain. Proc Univ Otago Med School 1959; 37:9.
    17. Hahn BH. Animal models of systemic lupus erythematosus. In: Wallace DJ, Dubois EL,eds. Lupus Erythematosus. Philadelphia: Lea & Febiger. 1987; 130-57.
    18. Arnett FC, Shulman LE. Studies in familial systemic lupus erythematosus. Medicine 1976; 55:313.
    19. Hochberg MC. The application of genetic epidemiology to systemic lupus erythematosus. J Rheumatol 1987; 14:867-9.
    20. Payne JF. A post-graduate lecture on lupus erythematosus. Clin J 1894; 4:223.
    21. Radcliffe-Crocker. Discussion on lupus erythematosus. Br J Dermatol 1898; 10:375.
    22. Hench PS. The reversibility of certain rheumatic and non-rheumatic conditions by the use of cortisone or of the pituitary adrenocorticotrophic hormone. Ann Intern Med 1952; 36:1.
    23. Lockshin MD. Therapy for systemic lupus erythematosus. N Engl J Med 1991; 324:189.

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    Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

    In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body.

    Inflammation is considered the primary feature of lupus. Inflammation, which in Latin means "set on fire," is characterized by pain, heat, redness, swelling and loss of function, either on the inside or on the outside of the body (or both).

    For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. Although epidemiological data on lupus is limited, studies suggest that more than 16,000 Americans develop lupus each year.

    The Lupus Foundation of America (LFA) estimates between 1.5 - 2 million Americans have a form of lupus, but the actual number may be higher. More than 90 percent of people with lupus are women. Symptoms and diagnosis occur most often when women are in their child-bearing years, between the ages of 15 and 45.

    In the United States, lupus is more common in African Americans, Latinos, Asians, and Native Americans than in Caucasians.

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    The basic problem is in an alteration in the immune system. The normal immune system, which produces antibodies against foreign invaders, such as bacteria, goes into ‘overdrive’ and produces too many antibodies. This in turn can affect any organ in the body.

    The cause is not known. There is a definite genetic tendency but despite years of research, no virus or infectious cause can be identified. Neither is there evidence of an environmental cause.

    The current figure for estimated sufferers is 1 in 750 Caucasian females and as high as 1 in 250 amongst Afro-Caribbean & Indian females. Although the cause is not known, research suggests that hereditary factors play a role. Advances in genetics have dramatically improved the pace of research for discovering the genes that contribute to lupus susceptibility, severity and mortality. The identification of these genes will provide a framework for understanding the basis of this illness.

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    During the past thirty years, more sensitive blood tests have allowed us to recognise that for every patient with severe lupus, there are many more with subtle forms of the disease who are undiagnosed.

    Blood tests are used both for confirmation as well as for monitoring the progress of the illness. The ANA (antinuclear antibody) test, if positive, should be followed by other specific tests to pinpoint more accurately the extent and type of the disease.

    Main tests in lupus:

    · Anti-nuclear antibodies ("screening test")
    · Anti-DNA antibody ("specific" for lupus)
    · Anti-cardiolipin antibody (clotting tendency)
    · Lupus anticoagulant (clotting tendency)
    · (ESR) erythrocyte sedimentation rate
    · (CRP) C-reactive protein
    · Routine blood count & chemistry
    · Complement
    · Urine


    Many patients, when first told they have lupus find information scarce and often full of gloom. Until recent years, lupus was widely regarded by doctors as a rare disease - sometimes as a dire disease, involving kidney damage and a fatality rate. They may have advised their patients against pregnancy at all cost and issued other alarming warnings.

    However, the real prognosis is good, indeed in the majority of patients, the disease can be brought under control and many patients are able to come off all their medication.

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    Treatment aims to suppress the overactive immune system and diminish inflammation. Treatment may be aggressive (e.g. steroids), but milder drugs are also widely used (e.g. antimalarials). With time the aim is to reduce drugs and ultimately discontinue their use. Patients may experience a fluctuating course of lupus, but most patients do get better and in the long term, aggressive treatment may not be needed.


    Generally drugs used in the treatment of lupus fall into 4 groups:

    1. Aspirin and Non Steroidals – low dose aspirin (75mg per day) “junior aspirin” is widely used in those patients with Hughes Syndrome (Antiphospholipid syndrome) or “sticky blood”. Non-steroidal anti-inflammatory drugs are also useful for joint and muscle pains but should be used sparingly because of their side effects on the stomach.

    2. Anti-malarials – Hydroxychloroquine (Plaquenil) is a mainstay of treatment for mild to moderate lupus. It has an anti-inflammatory effect as well as providing some protection against sunlight and is often used as the first line of treatment.

    3. Steroids – are vital and even life saving in acute flares but modern treatment aims at reducing or even stopping steroid treatment wherever possible.

    4. Immuno-suppressives – in lupus the immune system is overactive hence the development of a number of drugs used to suppress the overactive immune response. These include Azathioprine, Methotrexate, Mycophenolate and Mofetil (MMF) as well as the stronger cyclo-phosphamide. The latter drug is reserved for patients with active kidney disease and is usually administered by injection.

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    Fatigue:

    The most common feature of lupus is fatigue. It is a major symptom in some patients, and can be extremely distressing. The cause of this fatigue is still poorly understood, but generally, energy levels seem to improve once the disease is brought under control.


    Skin Rashes:

    These can affect any part of the body, the most well-known being the so called “butterfly rash” over the cheeks and the bridge of the nose. In many patients the rash is made worse by exposure to ultra-violet light e.g. sunlight.


    Hair Loss:

    Hair loss is an important feature of lupus and is often the first sign of a disease flare. In the majority of patients the hair grows back totally once the disease is brought under control.


    Joint Aches and Pains:

    Flu like symptoms are common in lupus patients and are a major feature of the disease. Sometimes joint pains can be severe, mimicking early rheumatoid arthritis but normally the joints are not damaged and this clearly differentiates lupus from rheumatoid arthritis.


    Dry (scratchy) eyes:

    Many patients with lupus also have “Sjögren’s syndrome” with poor tear secretion. This results in irritation of the eyes and in some patients quite marked dryness. This is usually helped by artificial tears (e.g. hypromellose eye-drops).


    Inflammation of Tissues covering internal organs:

    The thin “sausage-skin” covering internal organs such as the heart (pericardium) and lungs (pleura) can be inflamed leading to painful symptoms such as pleurisy.


    Depression:

    This is a major feature of lupus and very common indeed. It often requires both treatment of the lupus itself as well as the depression.


    Kidney Problems:

    The kidney is the “silent” organ and often patients do not know that the kidney is involved; it is common practice in our unit to teach patients to test their own urine (using “dip sticks” or “albustix sticks”). Urine testing is essential in lupus patients for the early detection of kidney involvement, for which treatment must be prompt.

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    DATE

    DESCRIPTION

    400 B.C.

    Hippocrates writes about red ulcerating skin lesions which may or may not be connected with Lupus.

    About 1200 A.D.

    The term Lupus is used for the first time to describe red ulcerations on the face. The word Lupus literally means wolf and there are two theories as to why it was used.


    (1) The most common theory is that the skin rash, like a wolf, seemed to eat away the skin and destroy it. The rash, therefore, was said to resemble skin which had actually been bitten by a wolf; and


    (2) The frightening appearance of some Lupus sufferers put people in mind of werewolves. These were seen as human who had magical power to transform themselves into animals. The rash therefore, was said to make people’s faces resemble the face of a wolf and in the superstitious middle ages, that meant werewolves.

    About 1800 A.D.

    Dr. Willan, a British Dermatologist, includes Lupus in his classification of skin diseases. His description of Lupus emphasised the destructive nature of the disease and the lack of any treatment. At this time he was probably describing tuberculosis of the skin which is still known as Lupus Vulgaris rather than Lupus Erythematosus. Later in the 19th century, Cazenare, a student of French Dermatologist Blett, introduces the term Lupus Erythematosus and confirms that this is distinct from other ulcerating skin.

    1875

    Kaposi, a Viennese physician, recognises that Lupus Erythematosus can produce dangerous constitutional symptoms as well as skin rashes. He is acknowledged to be the first person to describe Systemic Lupus Erythematosus and also the first to describe the butterfly rash on the Lupus sufferer’s face.

    1885-1903/4

    Sir William Osler, in a series of papers, expands the concept of SLE and describes heart, lung, joint, brain, kidney and stomach symptoms. He also recognises that some cases of SLE occur without skin involvement.

    1920s and 1930s

    Pathologists working at Mt. Sinai Hospital in New York describe a number of symptoms unique to SLE e.g. heart involvement known as Libman - Sacko endocarditis, a kidney lesion known as the wire loop and the hemotoxylin body. Also the term collagen disease is used by Dr Klemperer for the first time.

    1922

    The false positive test for syphilis is recognised as a reasonably common finding in SLE. (It is known that about 30% of SLE patients have a false positive Wasserman Test - this does not mean these people have venereal disease.)

    1948

    The LE phenomenon is refined by Dr. Hargraves at the Mayo Clinic and quickly becomes the basis for diagnosing SLE. This cell is essentially a white blood cell which has engulfed the nucleus of another cell. SLE can now be recognised in milder and milder forms and the LE cell discovery is the first clear sign that SLE could be an autoimmune disease.


    1950s

    Florescent tests to detect antibodies against the nucleus of cells are developed. Referred to as anti-nuclear antibody tests (ANA), 95% of SLE patients are known to be positive. Corticosteroids are used for the first time to control symptoms of SLE.

    1959

    At Otago Medical School the NZ Brown X NZ White hybrid mouse is discovered to develop a lethal kidney disease closely resembling Lupus Nephritis - the kidney disease which some people with SLE develop. This mouse has since been studied in laboratories all around the world. Other mice which develop Lupus-like diseases have also been bred, particularly in the United States. These mice have aided research tremendously.

    1960s

    The prognosis for Lupus sufferers improves dramatically as diagnosis improves, drugs are used more sensitively and public awareness begins to develop.

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    Introduction
    Our diet is of great interest to all of us. We believe that our health is linked to what we eat, and most of us make an effort to eat healthy food. Patients with systemic lupus erythematosus (SLE) sometimes wonder if their disease could be treated with special foods. We explore the relationship between food, eating and SLE in this article to help answer some common questions. We stress knowledge that is based on scientific evidence, and place less emphasis on advertisements and poorly-supported claims. A good book for us is The Essential Arthritis Cookbook, 1st edition, published by the Arthritis Center and the Department of Nutrition Sciences, Univerisity of Alabama at Birmingham, Appletree Press, Inc. Mankato, Minnesota.

    Can we treat SLE with special foods or diets?
    Unfortunately, there are few well-conducted studies regarding the treatment of SLE with foods. From animal studies, we know that restricting the amount of calorie (the amount of energy in food) eaten tends to prolong life and reduce heart disease in mice. There are special mice that develop a condition similar to SLE. When they are fed a diet rich in polyunsaturated fat, they developed less kidney damage and lower antibody levels. Polyunsaturated fat is found in vegetable oils, like margarine and corn oil, while saturated fat is found in food made from animals, like lard, ghee and butter. We also know that too much or too little iron in the body can worsen kidney damage and shorten life in rats. One study in humans found that polyunsaturated fat diet improves the blood chemical tests in twelve lupus patients, but they remained the same from other points of view.

    In summary, there is no evidence that special foods or diets can be used to treat SLE. However, the lessons learnt from animals are generally useful: we should have enough iron and polyunsaturated fat and we should not overeat. It is not clear if these help treat SLE, but they are good practices anyway.

    Are there any foods that may worsen my SLE?
    It is not proven that any food can worsen SLE or cause a disease flare, therefore, there is no need to avoid any particular food. Traditionally, Chinese people avoid prawns and crabs they are sick because they believe that they contain "toxins". Actually, Western medicine has not looked at this question, but logically, they should be OK for lupus patients.

    Lupus patients, however, have to avoid poorly-cooked or raw food because it contains bacteria that can cause problems. For example, chicken often harbour Campylobacter, so thorough cooking is necessary. Bacteria from food may cause vomiting and diarrhoea (foor poisoning) but on rare occasions, a generalised infection that can be dangerous may result.

    In recent years, people are turning to health foods and food supplements in the belief that their wellbeing may be enhanced. A food supplement is defined as any product (except tobacco) that contains at least one of the following: (1) a vitamin, (2) a mineral, (3) an herb or botanical, (4) an amino acid, (5) a dietary substance "for use to supplement the diet by increasing total dietary intake," or (6) any concentrate, metabolite, constituent, extract, or combination of any of the aforementioned ingredients. Since such supplements are not sold as drugs, there is no stringent control and sometimes unsubstantiated claims are made by the producers.

    Most of the time, they should be safe but how can we be sure? There is a check-list devised by the American Arthritis Foundation on how to spot an unproven remedy. It is obtained from the website http://www.arthritis.org/resource/fs/unproven.asp.

    Is it likely to work for me?

    • Claims to work for all types of arthritis as well as other health problems.
    • Uses only case histories or testimonials as proof.
    • Cites only one study as proof.
    • Cites a study without a control group.

    How safe is it?

    • Comes without any directions for proper use.
    • Does not list contents.
    • Has no information or warning about side-effects.
    • Is described as harmless or natural.

    How is it promoted?

    • Claims it's based on a secret formula.
    • Claims it cures arthritis.
    • Is available only from one source.
    • Is promoted only in the media, books or by mail order.

    A good diet for SLE patients
    How, then, should a lupus patient eat? The key is to take a healthy diet, just like anybody else. The Food Guide Pyramid from the United States Department of Agriculture (USDA) provides some good concepts for us to follow. It suggests the number of servings of each food group we should consume in a day. Going from the bottom of the Pyramid upwards, we should consume 6 to 11 servings of the carbohydrate group (bread, cereal and rice), 2 to 4 of the fruit group, 3 to 5 of the vegetable group, 2 to 3 of the meat group and we should use very little oil and fat. What is a serving? Well, it is difficult to define but examples of a serving each are a slice of bread, one cup of raw leafy vegetables, three-quarters cup of fruit juice, two to three ounces of cooked lean meat, poultry or fish.

    dietpyramid.jpg (54656 bytes)

    Diagram of the food Guide - Pyramid

    The official website is http://www.nal.usda.gov/fnic/Fpyr/pyramid.html.
    You will find more details about a good balanced there. The above diagram is taken from that site.

    Diets for special situations
    Sometimes, your doctor may feel that a special diet is in order. For proper education, he will refer you to see a Dietitian, who is a trained professional who is able to analyse your diet and give precise instructions to optimise your food intake.

    Conditions

    Special Diets

    Obesity

    Weight-reduction diet

    Gout

    Low-purine diet

    High blood cholesterol or fat

    Low cholesterol and low fat diet

    Nephrotic syndrome

    Low-sodium diet

    Kidney failure

    Low-protein diet

    Osteoporosis

    High-calcium diet

    Some tips on cooking and food
    We should know what we are capable of doing physically and plan our activities according to it. There is no point in frustrating ourselves with goals that are too hard to meet. An energy-saving plan is also needed in the kitchen. One way to save energy is to shop wisely, minimising the number of trips to the market without resulting in a shopping basket that is too heavy to carry. We should have enough rest between household chores and cooking. Learning to pamper our joints is useful especially if we have arthritis. Using the right kitchen tools is important. Blunt knives waste energy and cooking pots that are not well balanced on the stove may topple and pose a danger.

    The concept of convenience foods is useful. Our homes should be well-stocked with foods that are easily prepared for those days that we don’t feel well. These include canned food, canned soups, instant noodles and porridge, eggs and biscuits.

    What should we do when we don’t feel like eating? We should remember that food is important for our bodies even though it does not appeal to us. We should try to eat something. Making food more fragrant may stimulate our appetite. When our mouths are painful or dry, frequent sips of water can help (it’s fashionable to carry small bottles of water around anyway). Non-sugared and sourish sweets may help to stimulate saliva flow. We should avoid too much sugar because of weight gain and dental caries.

    Sometimes we feel like vomiting and have a poor appetite. Since we need to eat for energy, we must devise means to overcome this. Eating small amounts of simple foods can help. We should avoid milk, very sweet foods or large meals.

    Constipation is another common problem. When it is due to excessively hard stools, we should plan to eat less fibre (as found in vegetables, fruits and cereals) and drink more water and juices. Stool softeners like lactulose can help (this has to be given by your doctor). Inactivity can also lead to constipation, so we should remain active and spend less time in bed or on the couch.

    Often, diarrhoea is simply due to too little fibre in our diet and can be remedied by eating more of it. If it persists, we should consult a doctor to ensure that it is not due to infection or other diseases of the intestines like irritable bowel syndrome or inflammatory bowel disease.

    Heartburn may be treated by taking smaller meals and avoiding food just before bed. Smoking and obesity predispose to heartburn too. In addition, do not wear your belt too tightly! Medical treatment is needed if simple measures are not sufficient.

    Medication and diet
    There are a few things about food and diet we have to watch out for in relation to certain medications. Steroids, including prednisolone, methylprednisolone, dexamethasone, hydrocortisone, when ingested or injected (not usually not when applied on to the skin) can cause one to have a great appetite. It is not surprising that many people who are on steroids put on weight.

    Cyclophosphamide is often used to treat SLE especially when the disease is harder to control. When it is administered as a monthly injection, it can cause nausea and vomiting about four to six hours after the infusion. When this occurs, let your doctor know and he can prescribe another medicine to prevent this.

    Pain-killers like Ponstan or Honstan (mefenamic acid), Indocid (indomethacin), Oruvail (ketoprofen), Voltaren (diclofenac sodium), Synflex (naprosyn), Clinoril (sulindac) and others are best taken after meals to reduce gastric irritation. Panadol (paracetamol) is quite kind to the stomach and need not be taken after food.

    New to the market are drugs that can strengthen the bones in people with osteoporosis. These medicines (like etidronate or alendronate [Fosamax])are poorly absorbed when mixed with food. They are best taken half to one hour before foods. Since they can harm the initial portion of our intestines (the gullet or oesophagus), it is advisable to remain upright for an hour after taking them to ensure their rapid passage into the stomach.

    Summary
    SLE is not caused by foods, and it cannot be cured by eating a special selection of foods. The majority of lupus patients can enjoy a healthy normal diet. Sometimes, special dietary restrictions are required, for which the service of a Dietitian is invaluable. We also recommend a few simple measures to ensure that eating and cooking remain pleasurable. A few highlights about food and medicines are mentioned.

    Written by: Dr. Leong Khai Phang

    from : http://home1.pacific.net.sg/~lupusas/

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    Having been menaced by Lupus for the past three years, it is with great regrets that I have to admit until recently, I have not learnt to cope with the psychological stress associated with this chronic illness. It is not until now that ironically, when I'm in a relapse again that I truly realize the importance of learning to care for and love myself,

    My greatest fear about the complications of Lupus - kidney involvement finally became a reality to me. Those signs and symptoms: swelling, water- retention and breathlessness started appearing just as I was preparing for my exams two months ago. So, imagine the physical discomfort, emotional unease and psychological distress that I went through. And need I mention how 'tragic' my performance for the exams were?

    It is only now that I finally realize my mistake. My parents' repeated warnings, " Don't stress yourself" had fallen on my deafened ears. I only kept defending myself, " Don't worry, I feel normal, I know myself. But upon reflection, how wrong all these words turned out to be!

    When my condition was stabilized and under control, except for the occasional morning aches here and there, I thought I was well and 'normal' again and should therefore, lead a 'normal' lifestyle again. So, foolishly, I try to gain back 'lost' time in the academic race, This task was made more urgent as I, green with envy, had to stand aside to watch my friends obtain their first degrees. For the first time in my life, I was outpaced in the paper-chase. I thought I needed to speed things up a little and at the same time, perform even better than before to boost my own ego, my confidence.

    "Little Mimosa,
    shy are you
    knowing thyself well,
    Choosing to close upon pressure
    only to open up naturally
    when the coast is clear,
    What a good-model from
    mother-nature you are!"

    But the fact is, no matter how 'normal' I feel or how 'normal' I want to feel, there's only one truth - the cells in my body are just not normal! It is only now that I truly understand how crucial it is to accept this cruel truth and to learn to live with it"...harmoniously. Hence learning to 'care' for and love this new 'me' is the first step towards accepting my illness.

    Sun Tze's "Art of War" is useful here, This ancient Chinese military strategist advocated the importance of knowing yourself and your enemy before going into the battlefield, Since Lupus is an auto- immune disease, your own cells fighting against your very own cells resembling an internal rebellion, isn't your enemy your own body? So, learn to understand the limits of your new physical condition, how much physical and psychological stress your new body can withstand.

    The ancient Chinese philosopher, Confucius offers good advice too. Whatever we do and think, we should always strike a balance, not too much nor too little, So for our case, why not treat yourself as a delicate indoor plant which means special care, attention and treatment. To strike this balance it should not be showered with too much sunlight nor too much water. Everything must be moderate.

    Or perhaps, we can learn from the "mimosa" plant. Learn to reject disturbance (undue stress) and open up its leaves only when the danger has gone off. The "morning glory" can he pretty inspiring too. Learn to except naturally and flexibly and you'll still find your way up to the sun every morning.

    It is not helpful to keep asking such "unanswerable questions like - What have I done to deserve this? Why me of all people? Why am I so unlucky? Why? Why?

    Instead, we should learn to accept and live with the truth. Try to know your limits at each stage of your illness, take good care of yourself love it and treasure it. After all, there are many things happening beyond our control but at least, we are still masters of our own bodies, the 'new-me'.

    Penned by "Little Mimosa"

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    What is lupus?
    .....Lupus is a disease which can affect joints, muscles and other parts of the body. It is often described as an auto-immune disease. This means that for some unknown reason people with lupus seem to develop antibodies (which usually fight bacteria and viruses) that attack healthy tissues instead. This produces inflammation in different parts of the body resulting in pain and swelling. Lupus can also affect the skin, heart, lungs, nervous system, kidneys and blood and in particular the immune system. Lupus is a chronic, systemic disease. This means that it lasts a long time, probably for the rest of your life. However, nearly all people with lupus have periods of improvement (remissions). Some people have complete and long-lasting remissions.

    Who gets lupus?
    ..... Lupus tends to affect women in their childbearing years. However, lupus can occur in young children or in older people. The number of women affected outnumber men by nine to one. The disease is commoner in Orientals and Blacks.

    What causes lupus?
    .....We don't know the cause of lupus. Some people seem to inherit the tendency to get a disease like lupus. Research suggests that an unidentified virus may trigger the tendency and bring on the disease. A few drugs taken for conditions like high blood pressure or tuberculosis can cause symptoms just like lupus but these symptoms always disappear when the drug is stopped. Exposure to sunlight seems to trigger lupus in some people. the prospects of pulling this deal off.

    Lupus Symptoms
    .....Lupus can present in many different ways. The onset is usually gradual, with the development of vague feelings of disease until some specific lupus symptoms develop. Common symptoms include

    Fever Headache
    Fatigue Depression
    Loss of appetite; weight loss Easy bruising
    Aches & pains Edema/swelling
    Hair loss Swollen glands

    The following symptoms and signs are much more suggestive of lupus:

    • A rash over the cheeks and bridge of the nose
    • Rashes after exposure to the sun or ultraviolet light
    • Ulcers inside the mouth
    • Arthritis of two or more joints i.e, the joints hurt and are swollen
    • Pleurisy – pain in the chest on deep breathing
    • Seizure
    • Anemia
    • Raynaud's – fingers turning white and/or blue in the cold

    Diagnosing Lupus
    .....Lupus is usually easy to diagnose when an individual has many of the more characteristic symptoms and signs, but is made more difficult if only a few are present. Laboratory tests are then usually conducted to help confirm or reject the diagnosis, These tests may include a blood count and urine analysis. More specific laboratory tests look for antibodies, in particular antibodies to the nuclei of cells (the ANA or Anti-Nuclear Antibody test) and antibody to DNA. Over 99 per cent of people with lupus have a positive ANA test. However, only about 30 per cent of people with a positive ANA test have lupus.

    Treatment
    .....Lupus is an unpredictable disease but in most cases it can be successfully treated. Once an effective treatment program has been started, it is important for the patient to keep to it faithfully and to inform the doctor of any change in symptoms so that the medications can be modified.

    Medications
    ....

  • Corticosteroids

    Prednisolone is the most commonly used drug. Steroids are powerful drugs that suppress inflammation and are commonly used in controlling lupus. It is important for the patient to keep to the prescribed dose. Flare-ups of disease can occur if the dose is reduced too rapidly. NEVER ALTER YOUR DOSE OF CORTICOSTEROIDS WITHOUT FIRST DISCUSSING IT WITH YOUR DOCTOR, SINCE STOPPING THEM OR CHANGING THE DOSE QUICKLY CAN MAKE YOU VERY ILL.

  • Antimalarial Drugs

    Antimalarial drugs seem to be effective in reducing inflammation and controlling skin problems. These drugs increase resistance to sun exposure.

  • Aspirin and Other Anti-Inflammatory Drugs

    Aspirin and other anti-inflammatory drugs such as Indocid, Clinoril, Brufen and Naproxen may be the only medications the doctor will prescribe. These drugs control pain and reduce inflammation.

  • Immunosuppressiye Drugs

    Immunosuppressive drugs are usually used in conjunction with corticosteroids to control more severe disease. If you're taking an immunosuppressive, regular blood tests will be done because the drug can interfere with the formation of blood cells.

  • Ointments/Skin creams

    Your doctor may prescribe a cream containing a sunscreen to protect against sun exposure. Corticosteroid containing creams are used to control skin rashes.

    Pregnancy and Lupus
    .....Pregnancy may mean special problems for the woman with lupus since the disease affects people in their child-bearing years. The majority of women have normal pregnancies, although there is an increased risk of early miscarriage. There may be worsening of symptoms after delivery. It is important for the patient and doctor to discuss and plan the best time for the patient to have a child.

    Coping with lupus
    .....In a chronic disease like lupus, social and emotional problems are common. You may experience feelings of anger, fear and depression. It is extremely helpful to be able to talk about how you feel with someone close to you or someone who has had similar problems.

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