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.
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.
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.
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. |
Introduction Can we treat SLE with special foods or diets? 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? 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.
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Diets for special situations | ||||||||||||||
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Some tips on cooking and food 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 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 |
Written by: Dr. Leong Khai Phang
from : http://home1.pacific.net.sg/~lupusas/
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"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.
What is the biggest problem with SLE?
Symptoms of SLE may mimic the symptoms of other diseases. The main problem is that damage to the kidneys or bone marrow can go undetected until the later stages.
Why do doctors find it hard to diagnose SLE?
In the early stages of SLE, there may be only one or two visible symptoms causing the disease to be diagnosed after many weeks, months, or even years.
Why do some patients suffer only mild effects of SLE while for other patients, it could be so bad that it becomes fatal?
No one knows. Some patients produce antinuclear antibodies (ANA) in their blood. There are many types of ANA, some attack the kidneys and brain. However, whether their condition is serious or not, it is important for patients to obey their doctor and especially during flares. It is also possible that patients with milder symptoms may suffer more serious symptoms later.
Is there a cure for Lupus?
Presently, Lupus can only be controlled, not cured. Treatment varies depending on the patient. Patients with milder symptoms like joint pain, rashes, fever and fatigue require different treatment compared with patients with more serious conditions. We are glad that there are more treatment options now than there were 20 years ago.
What does remission in Lupus mean?
This means there are no more flares and only minimal treatment is needed.
Lifestyle
- It is advisable to use sun block (with SPF of at least 45)
- Use an umbrella, hat or wear long sleeved clothes to avoid getting too much sun
Medication
- Please follow your doctor’s prescription
- Do not stop your medication without your doctor’s approval
- Do not mix your medication with other medications of unknown origin. This is to avoid unwanted interactions between drugs
Follow-up Treatment
- Always keep your appointments with your doctor
- Obey your doctor’s instructions
Stress
- Try to avoid stress as it may trigger flares
- Always think positive
Diet
- Recognise foods that suit your individual system
- Have a balanced and healthy diet
- Observe a healthy diet with low salt, low fat, low sugar and take enough calcium and Vitamin D
Systemic Lupus Erythematosus (SLE) is a chronic, auto-immune disease of unknown cause where the patient’s body makes large quantities of blood proteins called anti-bodies that react against the person’s own tissues.
History
Lupus is the Latin word for wolf. Erythematosus means red rashes. In 1851, Dr. Cazenave discovered red rashes on a patient’s face that looked like wolf bites. He named the rash Discoid Lupus Erythematosus (DLE).
In 1885, Sir William Osler recognised that many people with lupus had a disease involving not only the skin but many other organs or systems. He named the disease Systemic Lupus Erythematosus (SLE).
Types of Lupus
Discoid Lupus Erythematosus (DLE)
• Only involves the skin
• Rarely spreads to other organs
Systematic Lupus Erythematosus (SLE)
• Can spread to other organs
• Can be fatal
Statistics
About 90% of SLE sufferers are women while about 10% are men and children.
About 90% of women with SLE are in their childbearing years, within the range of 15 to 50 years old.
Ratio of SLE sufferers :
In the West, among Afro-Carribeans 1 in 250-500 people
USA - 1 in 2,000 people
China - 1 in 1,000 people
In Malaysia, it is estimated that more than 10,000 people have been diagnosed with SLE over the past 30 years. However, this number may be only the tip of the iceberg. The Malaysian SLE Association believes that there are many more SLE sufferers in Malaysia who have not been diagnosed.
This blog is dedicated to my brother who is a SLE patient. He was diagnose with the disease at 15 years old and now he is 19 years old. He is a good boy and cheerful person. He is a loving son to my mother and father and a caring brother to me. He is a clever boy and respectful amongst friends.
He is now warded at Hospital Besar Kota Bharu for a dialisis since last month due to his kidney problem. I hope he will have some regression and can come back home soon!
