The first time many people hear the term lupus is when a doctor begins to test for the condition or when a family member or friend is stricken with the disease. In a recent survey conducted by the Lupus Foundation of America, 22% of respondents had never heard of lupus and 39% recognized the name but knew little to nothing about the disease.
Lupus is not a new condition, and it’s surprising that so few know so little about the disease that affects 1.5 million Americans according to the Lupus Foundation of America. This estimate is likely low, because individuals with milder cases may not follow up and get a firm diagnosis.
This is a disease that typically averages $6,100 to $10,000 per year per patient in treatment costs, and two of three lupus patients diagnosed reported a partial or complete loss of income due to lupus health problems which prevented working. One in three sufferers is temporarily disabled due to the disease at some point in life, and one in four patients with lupus are currently on disability payments.
Lupus is no laughing matter for those suffering from the disease or in a country where health care costs are continuing to spiral out of control. We’re talking about a disease that is often physically and emotionally devastating for the sufferer, extremely taxing on family and friends trying to provide care and support, and also pulls a huge number of talented and hard working (when not sick) individuals out of the work pool and at early ages.
What is lupus?
Lupus (Systemic Lupus Erythematosus - SLE) is a chronic autoimmune disease. The disease can affect virtually any system in the body. It’s basically like the person being allergic to their own body. The immune system which should kick in and help a person fight off physical problems instead kicks in (for no apparent reason) and attacks healthy body tissues including joints in particular but also other parts of the body as well as major organs in some cases.
Some of the parts of the body which can be impacted by lupus attacks (or flares) include:
Blood Forming Organs
Though lupus is occasionally compared to AIDS, it’s actually the reverse of that disease. Immune systems in AIDS patients are not kicking in while with lupus, the immune system is stuck in high gear and the system intended to heal ends up attacking healthy body tissues. Both diseases involve immune system problems, but at different ends of the spectrum. Also, while AIDS is transmittable, lupus is not. You can't contract lupus from someone suffering with the disease.
Though advances are being made in the treatment of HIV/AIDS, most patients do die eventually of problems associated with having HIV/AIDS. Lupus patients generally live a normal lifespan though some patients with major organ involvement do die from lupus related attacks. Older literature suggests that lupus is a virtual death sentence, but that definitely is not the case. Most lupus patients have ups and downs, but most learn to control and deal with the disease. Seek out recent data on lupus. The gloomy materials from generations back do not reflect the reality today.
If lupus can be compared to another disease, it would be multiple sclerosis (MS) which is a more commonly known disease. The two diseases are considered “sister” conditions. While MS attacks muscles (and other body systems), lupus attacks joints (and other body systems).
When Montel Williams shared his story about having MS on his television talk show, that increased awareness. Though lupus did not and has not been spotlighted in the same way yet, research in autoimmune conditions in general does benefit those suffering from other conditions like lupus.
Signs of Lupus
Lupus displays different symptoms in different patients and can change from day to day for any specific person suffering with the disease. This has made it hard to identify lupus as a specific disease/condition and also has made it hard for patients to be positively diagnosed. A lupus patient may be feeling pretty rough but be much improved by the time an appointment evaluation rolls around.
Still there are some signs that suggest lupus and also some medical tests that can help confirm a diagnosis.
Malar Face Rash
One of the most unique symptoms of lupus is the malar rash. This rash looks like a bright sunburn and covers the checks and sometimes the bridge of the nose in a butterfly shape. The rash is often mistaken as rosacea which is a skin condition most notably associated with W.C. Fields and with Princess Diana. Most general practitioners can detect the difference in the two types of skin conditions, but a visit to a dermatologist is often recommended.
The most common complaints for those ultimately diagnosed as suffering from lupus include joint pain and/or joint swelling. This pain comes and goes unlike most cases of arthritis which may ease some but still provides a constant reminder that arthritis is a fulltime joint issue. Constant swelling and joint deformations are rarely seen in lupus patients. One day may involve joint swelling and pain. The next may be pretty pain free when it comes to joints. It’s easy to pass the off the “on and off” symptoms as simple, minor joint strains.
Many lupus patients are incorrectly diagnosed as having arthritis, and most end up with referrals to rheumatologists who specialize in joint problems. As things stand now, rheumatologists are usually part of the lupus treatment team after a firm diagnosis is made. Though joint problems are part of the syndrome, lupus goes much deeper than the joints in many cases.
Extreme fatigue is a common complaint of those suffering from lupus. This is not a feeling of just being tired and needing a little rest. It’s like having a truck parked on top of you, and it can be a strain just to put one foot in front of the other. Often doctors will initially chalk up this extreme feeling of fatigue to depression or even to a condition called chronic fatigue syndrome.
Low Grade Fever
Another interesting side affect of lupus found in some patients is a low grade fever. The person may feel fine but rather chronically run high on temperature. In some cases, the fever does signal infections which are very common in those suffering from lupus. When the immune system is not working correctly, various problems like sinus infections may become chronic side conditions.
Road to Diagnosis Can be Long and Trying
Many patients go years before being identified as suffering from lupus. When a patient visits the doctor with achy joints, fatigue, and a low grade fever, it’s simply difficult to identify the root cause or causes. Sometimes the unusual malar rash is the tip off, but a good number of patients never show skin signs and those who do may not be in face flare during a visit to the medical doctor.
The average time for a positive diagnosis according to the Lupus Foundation of America is four years and includes the patient having seen three or more doctors before being given a correct diagnosis. Many sufferers especially in the older age ranges mention ten years or more before being correctly diagnosed.
There are Different Types of Lupus
If your doctor mentions lupus, be sure to have him or her specify the variety. There are different types of lupus, and they are very different conditions overall with different treatment approaches and with different typical outcomes.
SLE or the systemic type is or can be a body wide condition and the most serious generally. Typically if someone mentions having lupus, they are talking about SLE.
Discoid lupus impacts on the skin and can be quite disfiguring. Disk like patches cover the facial skin. Generally, discoid lupus is confined to the face with no body system involvement.
Drug-induced lupus occurs because of a reaction to drugs. When the offending drugs are discontinued, the temporary lupus backs off and goes away.
Mixed autoimmune conditions can include lupus as well as other immune problems. This again complicates diagnosis as well as treatment plans. It's quite possible to have lupus in condition with other immune diseases.
It’s important to know which type of lupus the doctor is considering. Frankly, it seems that these different but somewhat related conditions should be given different labels. If you do your own research (which is a good idea), you’re looking at very different concerns depending on the exact type of lupus you’re dealing with. Be sure to ask for clarification.
Some People are More Prone to Lupus Than Others
Most lupus sufferers are female. About 90% of diagnosed individuals are women.
African-Americans, Hispanics, Asians and Native Americans are at least twice as likely to have lupus as Caucasians.
For those who have and are diagnosed with lupus the averge ages are between 15 and 45 years.
Families with a history of autoimmune conditions show a slightly higher rate of other family members having lupus; however, rates for siblings, children and other relatives are rather low statistically. The average rate of having more than one member with lupus or a related condition is 20%. Children of mothers with lupus run about a 5% of developing the disease.
Some students suggest that a history of having purpra during childhood increases the chances of having lupus as an adult.
Testing for Lupus
If your doctor does suspect lupus based on outward or self-reported symptoms, he or she will take blood and run an antinuclear antibody test called and ANA test. This test determines whether you have specific antibodies made by your immune system which are or can attack your body.
A positive ANA test can only suggest lupus. Often, the test comes back false positive.In other words, the test suggests that you have lupus when, in fact, you do not. So, the doctor will consider the test along with other tests in making a determination on the diagnosis.
In a few cases, all the classic signs of lupus are evident, but the ANA comes back negative. Some rheumatologists refuse to consider a false negative test and will not classify a patient with a negative ANA as having the disease. A few doctors are now accepting that lupus (or some similar type autoimmune condition) may be present even when the ANA test does not indicate the presence of antibodies generally seen in lupus cases.
Treatments for Lupus
Currently, there is not cure for lupus. Fortunately, most patients do not have to deal with the illness on a daily basis. Flares come and go. Some patients rarely experience any problems associated with lupus while others cycle (active periods followed by remissions) and must be more diligent in following treatment regimens. A few lupus patients are critically ill and often.
A number of drugs are used to treat symptoms and also to keep lupus in remission. Some things work for some patients and not for others. It’s important to work with a general practitioner and with specialists in staying on top of problems and preventing flares.
It’s also a good idea to take an active role in the management of the disease. You know your body better than your medical team members.
A solid, healthy diet and stress reduction are important for those dealing with lupus. Most lupus sufferers must also avoid certain triggers which can include various foods and exposure to the sun and heat.
Some patients have had luck with some herbal treatments. Use herbals with care, and make sure to inform your medical doctor(s) if you are dabbling with non-traditional medicinals. Most doctors are fine with patients using basic vitamins like C and B. Vitamin E and aloe vera gel (mixed with fruit juice) also seems to help joint pain and does not tend to give most users any problems.
A Little History on this Not-So-New Condition
Though the medical term lupus dates back to the late 1400s, Hans von Gersdorf is thought to be the first medical writer to associate the word to what we today consider the disease lupus.
Earlier on, the term was more descriptive and used to note skin eruptions on various parts of the body. It’s likely that many ulcers of unexplained origin were dubbed lupus during the middle ages. It’s also quite possible that various skin cancers were thought to be or were called lupus.
The term lupus comes from Latin and is translated as “wolf.” Since early medicine involved primarily noting what could be seen with the naked eye, doctors (and lay people) probably felt that the skin involvement often seen in cases where patients were suffering from discoid lupus looked like wolf bites.
Though discoid lupus (involvement of the facial skin) continues to present with rather unappealing disk-like sores and though many patients with lupus have malar rashes (butterfly shaped sunburn looking facial patterns) the discoid condition is a skin problem and rarely looks like any sort of animal bite except in extreme cases. Only 10% of those diagnosed with lupus are discoid sufferers. The bulk of lupus diagnosed patients suffer from the systemic condition.
During the 1950s, medical researchers began to look at and more systematically study the conditions dubbed lupus. In 1971, a committee of North American rheumatologists drafted out a criteria lists which was modified slightly in 1982 and is the standard for diagnosis in most countries today.
The list of criteria as published by the American Rheumatism Association includes the following markers which may (or may not) indicate lupus are as follows:
Positive fluorescent antinuclear antibody (FANA) or ANA test result
If a patient presents with 4 or more of these problems, then most doctors will seriously consider lupus as the problem. Still, lupus is an elusive disease and one that is hard to pinpoint.
Expect to See and Hear More About Lupus in the Future
Lupus is not a new disease, so it's odd that it's rarely known about by the general public. Recently, more information has been available. There are a number of good books on the market, and the internet has both information and chat spaces for those suffering from or interested in the disease.