Thursday, 19 December 2013

10 Things You Should Know About Lupus


In autoimmune disorders like lupus, the immune system does not work in the way it should. The immune system is what protects our bodies from aliens like bacteria, viruses and other such nasties. When the body comes into contact with any of these aliens, it makes antibodies - the Jedis, which attack and destroy any invading aliens. An immune system that functions normally, it can tell the difference between aliens and body tissue, so that the antibodies only attack the bad guys and leaves the good guys alone. In autoimmune disorders, the immune system cannot tell the difference between good and bad, and it produces these nasty autoantibodies (the dark side of the Force), which attack both the good and bad guys. The immune system turns against the body, (hence 'autoimmune'; 'auto means self') you are up against the full might of your immune system, which attacks body tissue just as savagely as it attacks invaders. This autoimmune mechanism is what causes the inflammation, pain and swelling in autoimmune disorders like lupus. The SLE Lupus Foundation explains, "When you have lupus, your immune system has stopped working properly, and antibodies that normally protect you against infection are misdirected and react against substances in your cells or tissues. This may cause inflammation, injury and pain [to your body and organs]." 


It is not yet known what exactly causes lupus, although doctors and scientists think it may be caused by a combination of genetics, environmental factors " possibly hormonal factors combine in some way to cause the condition."*  The LRI add that while " lupus can run in families, it most likely takes external factors to trigger the illness, such as overexposure to ultraviolet rays or the use of certain drugs. Infection, trauma, stress, surgery and hormones may also trigger lupus." Please be aware that lupus is NOT a sexually transmitted disease, NOR can it be transmitted from person to person in any other way. LUPUS IS NOT CONTAGIOUS. *


The most common lupus symptoms may include fevers, blood disorders such as anaemia and blood clots, skin rashes (including the infamous butterfly rash), hair loss, severe fatigue, muscle and joint pain and swelling, pleurisy, oral and nasal ulcers, sun sensitivity, kidney disorders, weight and appetite loss, seizures, psychosis, depression, organ involvement, lupus 'fog' (cognitive dysfunction) and migraines. Because lupus can potentially affect every and any organ in the body, the symptoms are wide-ranging; lupus affects every patient differently. No two lupus patients are ever the same. Similarly, treatments that work well for one lupus patient may not work in another, and vice versa. There may be other symptoms not mentioned on the list above. The intensity of the lupus is also different for every lupus patient; some may have mild forms, others may have moderate, or severe, or life-threatening. Treatment of lupus must be tailored to the individual patient.


Diagnosing lupus is often very difficult and can take a long time. It can be a very frustrating experience. Lupus is known as the 'great mimic', because the symptoms are often similar to other illnesses, like MS, arthritis, Lyme disease and many others. There is no single lab test which can diagnose lupus, so physicians use a number of diagnostic tests, your medical history and conduct physical examinations to come to a final diagnosis. Many physicians use the American College of Rheumatology's lupus criteria to help them diagnose lupus. If you meet at least four out of the eleven criteria, then it is highly likely that you have lupus:
The “Eleven Criteria of Lupus”

1. Malar rash – butterfly-shaped rash across cheeks and nose

2. Discoid (skin) rash – raised red patches

3. Photosensitivity – skin rash as a result of unusual reaction to sunlight or sometimes a flare of other lupus symptoms after sun exposure

4. Mouth or nose ulcers – usually painless

5. Nonerosive Arthritis – (bones around joints do not get destroyed) in 2 or more joints with tenderness, swelling or effusion

6. Cardio-pulmonary involvement - inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)

7. Neurologic disorder - seizures and/or psychosis

8. Renal (kidney) disorder - excessive protein in the urine, or cellular casts in the urine

9. Hematologic (blood) disorder - hemolytic anemia, low white blood cell count, or low platelet count

10. Immunologic disorder - antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin

11. Antinuclear antibodies (ANA) – positive test in absence of drugs known to induce it. 

The Lupus Research Institute adds that a "positive antinuclear antibody (ANA) test does
not automatically mean you have lupus. Your immune system is your body's natural defense against disease. A positive ANA blood test shows that your immune system is making an antibody (protein) that reacts with components of your body's cells. This is called autoimmunity and may or may not be harmful to your body. So while a positive ANA may be associated with an autoimmune illness like lupus, it does not mean you have the disease. Approximately 20% of the normal population will have a positive ANA test; positive tests are also seen in other conditions, such as thyroid disease, certain liver conditions, and other autoimmune diseases." 


Some lupus statistics provided by the Lupus Foundation of America:

  • Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women.  Most people will develop lupus between the ages of 15-44. 
  • 20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
  • The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
  • Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected.  Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases.  Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications.  The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
  • Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.  
  • A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  • About 5 percent of the children born to individuals with lupus will develop the illness                              



Hair loss is quite common in lupus patients, whether it is caused by the lupus itself or by certain medications such as methotrexate. The Mayo Clinic say that "lupus causes widespread inflammation that usually involves your skin — particularly on your face and scalp. Lupus can cause the hair on your scalp to gradually thin out, although a few people lose clumps of hair. Loss of eyebrow, eyelash, beard and body hair also is possible. In most cases, your hair will grow back when your lupus is treated. But some people with lupus develop round (discoid) lesions on the scalp. Because these discoid lesions scar your hair follicles, they do cause permanent hair loss. Lupus can also cause the scalp hair along your hairline to become fragile and break off easily, leaving you with a ragged appearance known as lupus hair. Hair loss may be an early sign of lupus, before the disease is diagnosed. But many other disorders can cause hair loss, so consult with your doctor if you notice unusual hair thinning or hair loss". 


Lupus can also affect the gastrointestinal (GI) system. The GI system consists of your mouth, throat, oesophagus, liver, pancreas, gallbaldder, intestines and rectum. Problems with the digestive system can be caused by the lupus itself, or by certain medications or by another illness. Acid reflux is a common problem, which is where stomach acid rises back up through your oesophagus, causing the familiar 'heartburn' sensation. Acid reflux is a chronic condition. There are medications that can help with this. Other problems include chronic constipation and side effects of certain drugs which cause symptoms like diarrhea, nausea and peptic ulcers. Steroids and NSAIDS such as aspirin-type drugs can irritate the stomach lining and potentially cause peptic ulcers. Gastroparesis caused by autonomic dysfunction is a common, but serious condition that can sometimes affect lupus patients. Other problems include pancreatitis,  IBS (irritable bowel syndrome), gastritis and liver problems (hepatic vasculitis, lupus hepatitis, medication side effects etc).


Lupus can affect the kidneys. 1 in 3 lupus patients have kidney involvement such as lupus nephritis. Lupus nephritis occurs due to the lupus causing "inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body." Symptoms may include swelling of feet and other limbs, high blood pressure, blood and/or protein in urine and foamy pee. Lupus nephritis is a very serious illness and can lead to complications, such as end stage kidney disease. If your doctor suspects kidney troubles, he or she will order blood tests for creatinine and BUN. Lupus nephritis damages the affected kidney. It is treated in the same way as SLE lupus, depending on the severity of the kidney damage. Other causes of kidney problems in lupus patients may include infections (e.g. UTIs, kidney infections) and damage caused by certain medications e.g. aspirin and other NSAIDs.


Lupus patients are more likely to suffer from migraine-like headaches. Headaches and migraines are other common symptoms of lupus, which can occur with or without a flare. They can be quite painful and debilitating, producing typical migraine symptoms like vomiting, severe pain, visual distortions, sweats, light sensitivity, fatigue and nausea. Lupus headache is managed much like conventional migraine, using painkillers, anti-inflammatories, vasoconstrictors, & sometimes beta-blockers, or tricyclic antidepressantsWhat distinguishes these migraines from ordinary ones is that lupus migraines tend to respond better to steroids than traditional migraine treatments. Patients may respond to a 1 week trial of 20-60 milligrams of prednisone daily, which is rarely useful to migraine sufferers.


Depression is very common in lupus patients. It can either be a primary symptom of lupus, or caused by certain medications such as steroids or is a reactive depression. Symptoms of depression include low mood, fatigue, tearfulness, apathy, suicidal thoughts, anxiety, despair, sleep disturbances, irritability, weight and appetite changes, difficulty concentrating, loss of interest in things you used to enjoy and negative thoughts. Depression is usually treated through a combination of medication and talking therapies, depending on the cause and severity of your depression.

It is not surprising that people with chronic, painful and debilitating illnesses experience reactive depression. Constantly dealing with pain and illness takes its toll on our state of mind. People with chronic illness often have a lower quality of life; even more so if the pain or illness itself is poorly controlled. Lupus is an unpredictable and uncertain disease, and dealing with it is very stressful. It is hard to make plans, or look forward to the future when there is no way of predicting when the next flare up will happen. When we have no control over what happens to us, we may feel frustrated and helpless. Other issues, such as social isolation, loss of employment, money troubles, relationship breakdown, loss of independence and having to rely on others for even the most basic needs can also take their toll on us. Feelings of guilt occur because we worry about being a burden and not being able to do much for ourselves. 

Never be ashamed about seeking help for your depression. It takes a lot of strength and courage to ask for help. It is not a sign of weakness, or because you cannot cope. Depression is an illness just like a physical illness. It is not your fault. Always know that.   

For further information and for advice about how to manage this issue, please visit Healthline


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