When you tell people you have Lupus, most of the time they kind of draw a blank stare and try to walk away from you as if you have cooties. I will just try to explain what Lupus is to the general population and let people know-we are not contagious, we didn't cause this disease by a lifestyle choice, and if you see us having a good day-please do not think that means we are suddenly cured!
Autoimmune Disease occurs when the body mistakenly attacks healthy tissue. No one knows why this occurs, but it has been surmised that there is some combination of genetic, environmental, or viral triggers. There are many types of autoimmune diseases, Type 1Diabetes, Multiple Sclerosis, and Rheumatoid Arthritis are perhaps the most well known. Autoimmune diseases can have many similar symptoms, but no two people will have the same course of the disease. Lupus-from the Latin Lupus and the Italian Lupo means wolf. Lupus is also an autoimmune disease, perhaps not as well known as the others already mentioned, unless you watch “House”. In Lupus, something causes your immune system to go haywire. Antibodies are proteins produced by our immune system that protect the body from germs, bacteria, and viruses. Autoimmune means your body cannot tell the difference between foreign invaders and your own healthy tissue. The antibodies cause inflammation, pain, and damage in almost all body systems. Lupus is not contagious, not sexually transmitted, not related to cancer, and not like HIV( in fact it is the opposite of HIV-an immune system attacking everything). Women of childbearing age (15-44) are most likely to develop Lupus, although men, children, and teenagers can develop it, also. Women of African and Asian descent are more 2-3 times more likely to develop lupus. But, people of all races and ethnic groups can develop lupus.
There are four recognized types of Lupus. There is neonatal lupus, generally a child born to a mother with Lupus who displays symptoms of the disease. There is cutaneous (discoid) or skin Lupus. This can cause a flat, disc shaped rash to form. There is drug-induced Lupus. Some types of drugs can bring on Systemic Lupus Eryhtematosus or cutaneous Lupus. There is also Systemic Lupus Erythematosus or SLE (from here on I will refer to Systemic Lupus in this post as SLE). SLE can affect many or all organ systems and also the skin. No two people will have the same symptoms. Some have mild cases, some can die from it. SLE is also a disease of flares-when symptoms worsen- and remission-when symptoms improve. Most people who have SLE can lead a full life with care and diligence.
Many people who have SLE, but have not been diagnosed, know something is not right. The symptoms can be mild, and therefore, many people just live with the problems. Some may think it is just normal aging. There can be fatigue, achy joints, and just a general feeling of malaise . Other people can develop quite a nasty case-or perhaps are in a flare of the disease-and can face life-threatening complications, such as pulmonary embolism(blood clot in the lung), pneumonia, kidney failure, and many other issues with internal organs and body systems. The Lupus Foundation Of America contains up to date and accurate information about SLE. The following list of criteria is from the Foundation’s website.
The American College of Rheumatology(ACR) list 11 common criteria to help doctors diagnose SLE. The ACR is a professional group of rheumatologists-the doctors who specialize in treating diseases of the joints and muscles, like SLE. There is a strong chance you have SLE if you have at least four of the criteria, either at the present time or some time in the past.
1) Malar rash- a rash over the cheeks and nose, often in the shape of a butterfly
2) Discoid rash- a rash that appears as red, raised, disk-shaped patches
3) Photosensitivity- a reaction to sun or light that causes a skin rash to appear or get worse
4) Oral ulcers- sores appearing in the mouth
5) Arthritis- joint pain and swelling of two or more joints in which bones around the joints do not become destroyed
6) Serositis- an inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing(pericarditis)
7) Kidney disorder- persistent protein of cellular casts in the urine
8) Neurological disorder- seizures, psychosis, headaches
9) Blood disorder-anemia (low red blood cell count), Leukopenia (low white blood cell count), lymphopenia(low level of specific white blood cells), or thrombocytopenia(low platelet count)
10) Immunologic disorder-abnormal anti-double stranded DNA or anti Sm, positive antiphospholipid antibodies
11) Abnormal antinuclear antibody(ANA)
People with SLE may also experience symptoms that do not appear in the ACR
-Fever (over 100)
-Fingers turning white and/or blue when cold(Raynaud’s phenomenom)
http://www.lupus.org/newsite/pages/body_tool.aspx-this provides an interactive tool to determine if you have SLE symptoms.
People diagnosed with Lupus, on average, have had symptoms for many years. Many have endured ignorant physicians who doubt that the person is having any issues, as many times women are treated as chronic complainers by many in the medical community. That is a big problem among many SLE sufferers. Symptoms also can be very vague, causing physicians to just assume that the person is perhaps recovering from the flu, or another illness.
SLE is mainly a disease of chronic inflammation. You could have inflammation in the blood vessels, which in turn affect all of the organ systems. If you have the clotting disorder, you have to be vigilant if you injure yourself, as the chances of developing a DVT (Deep Vein Thrombosis-or blood clot) or pulmonary embolism(blood clot in the lung-many times fatal) are increased because of this disorder. You have to take aspirin or sometimes anti-coagulants-such as Coumadin-to ensure no blood clots form. Many time people with SLE have swallowing or gastrointestinal disorders, caused by the chronic inflammation. There can be frequent kidney infections. SLE can cause miscarriages, although many women with proper care can have a successful pregnancy. You can also develop a chronic rash-usually butterfly-shaped on your nose and cheeks. It kind of looks like you have a slight sunburn. You can also develop a body-wide rash, especially after sun exposure. This can last for months, if your unlucky!
Generally, a diagnosis of SLE is made by a rheumatologist. There is no cure, however, there are several options available to help with symptoms. The first drugs usually tried are Aspirin or NSAIDS(Non-steroidal anti-inflammatory drugs-such as Ibuprofen or Relafen tm-nabumetone). These can help with mild aches and pains, but usually are not as effective for a flare of SLE. Also, long term use of aspirin and NSAIDS can cause stomach irritation, so they are usually taken with food and/or antacids.
The next drug usually tried is steroids. Steroids can help by decreasing inflammation. However, long-term steroid use can cause several health problems, also. Diabetes can occur, as long-term steroid use can raise glucose levels. Also, skin can become fragile and have poor healing from the long-term use of steroids. Long-term steroid use can cause bone necrosis(bone death), especially in the hips. Many times, a rheumatologist will prescribe a short trial dose of steroids to see if they have any affect. Many people with SLE will have increased energy and less painful joints when taking an initial round of steroids. The problem is, the body develops a tolerance, and each subsequent round of steroids requires a higher dose. Long-term steroid use is usually not indicated unless someone is having an acute flare of SLE, and there is a limited time that they will take steroids.
Another drug used to treat SLE symptoms is Plaquenil tm(generic is hydroxycloroquine). Plaquenil is an anti-malarial drug that can help decrease the joint pain and inflammation caused by SLE. Plaquenil does not work for everyone, and some can develop an allergy to the drug.
Cellcept tm(generic is Mycophenolate Mofetil) is a drug frequently prescribed for people who have undergone organ transplants. Cellcept is an immunosuppressant, therefore it is used to treat SLE-as SLE is an immune system that has run amok. This drug can help keep an overactive immune system in check. It also can cause birth defects, can cause some types of cancer, so monthly blood tests are necessary. It can also make you more susceptible to infections.
Cytotaxan tm (cyclophosphamide) is a drug developed to fight cancer. It has been shown to improve kidney and lung disease in SLE patients. It is usually given intravenously(IV). It can cause bladder problems, hair loss, sterility, and can affect a woman’s menstrual cycle.
Rheumatrex tm(Methotrexate) is also a cancer drug, but it is known as the best treatment for rheumatoid arthritis. It is also affective in treating the skin, joint pain, and pleurisy in people with SLE. This drug can also cause photosensitivity, pancreatitis and an allergic form of hepatitis. Use of this drug also requires frequent blood tests to check blood counts and liver function.
Many people with SLE turn to alternative therapies to help manage their symptoms. Acupuncture has been shown to provide relief of some joint pain. Biofeedback techniques can help with stress and pain management. Some herbal supplements can actually harm a person or make their symptoms worse, or cause harmful drug interactions. Therefore, any complementary or alternative therapies should be discussed with their physician.
SLE is not a death sentence, but ignore it at your own peril. If you sense something is wrong, be persistent. Do not be afraid to question your medical providers. Do not take no for an answer. I had symptoms of Lupus and other autoimmune diseases my entire adult life, and yet was ignored, belittled and demeaned by many physicians. I was actually diagnosed at age 44-and that criteria-where 4 of the 11 items makes you suspect for having Lupus-I have 10 of the 11 criteria. YOU ARE YOUR BEST HEALTH ADVOCATE. Knowledge is your best weapon. Know your symptoms-use reputable websites and literature-such as The Lupus Foundation of America for Lupus, and The Mayo Clinic and The National Institutes of Health for any other health issues. It is very important to know what your are up against and to work with your rheumatologist to find a treatment that helps. Do not be afraid to find another rheumatologist if you feel like your needs are not being addressed. Remember, with regular treatment and follow-up, most SLE sufferers can live a long and productive life.