Systemic Lupus Erythematosus

I have been meaning to do a post about Lupus for a while now and decided that today is the day. It makes me angry that people don't really know what "Lupus" is even though it affects 1.5 million Americans and at least 5 million people worldwide. When I tell people that I have lupus aka sle they are like, "Oh, like that one girl on Top Model." It's like yes; however, lupus affects each person differently. It's not one size fit all. It really upsets me how uneducated people can be. Especially when they find out that I have sle and says things like, "But you don't look sick, are you cured now." I may not look sick from the outside but inside my body is destroying itself. Some people can be really insensitive. There is NO CURE for sle.

Lupus is an autoimmune disease. In some ways, lupus represents a kind of allergic reaction by the body, in which the immune system sees the body’s own healthy tissues and cells as foreign.
Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.
Lupus has many different symptoms, and because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, and/or visible skin lesions.
Lupus is unpredictable. Doctors don't know the cause of Lupus. They think that it is genetic and the environment that causes a person to have Lupus.

Here are some Lupus Facts:
Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.

Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.

Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

There are 4 forms of Lupus. I have SLE

Systemic Lupus Erythematosus

Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can be mild or severe. Some of the more serious complications involving major organ systems are:
inflammation of the kidneys (lupus nephritis), which can affect the body’s ability to filter waste from the blood and 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 nervous system and brain, which can cause memory problems, confusion, headaches, and strokes
inflammation in the brain’s blood vessels, which can cause high fevers, seizures, behavioral changes,
hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack

Cutaneous Lupus Erythematosus

Cutaneous refers to the skin, and this form of lupus is limited to the skin. Although there are many types of rashes and lesions (sores) caused by cutaneous lupus, the most common rash is raised, scaly and red, but not itchy. It is commonly known as a discoid rash, because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is a rash over the cheeks and across the bridge of the nose, known as the butterfly rash. Other rashes or sores may appear on the face, neck, or scalp (areas of the skin that are exposed to sunlight or fluorescent light), or in the mouth, nose, or vagina. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Approximately 10 percent of people who have cutaneous lupus will develop systemic lupus. However, it is likely that these people already had systemic lupus, with the skin rash as their main symptom.

Drug-induced Lupus Erythematosus

Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected.

The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.

Neonatal Lupus

Neonatal lupus is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts, but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth. Most infants of mothers with lupus are entirely healthy.

With sle I have experience hair loss. I use to have three times the amount of hair that I have now. A severe lupus flare can result in fragile hair that breaks easily. It is good that I have a lot of hair to begin with or else I would be bald.

I have also experience Raynaud’s phenomenon. Raynaud phenomenon is a condition in which the blood vessels in your hands and feet go into spasm, causing restricted blood flow. Lupus-related Raynaud’s usually results from inflammation of nerves or blood vessels and most often happens in cold temperatures, causing the tips of your fingers or toes to turn red, white, or blue. My hand and feet usually will feel numb for a couple of hours and it will stay cold and stiff during that whole time.

Besides having major headaches, arthritis pain and the noticeable butterfly rash, I also experienced the "lupus fog." The term "lupus fog" reflects the difficulty that I have in completing once-familiar tasks, such as remembering names and dates, keeping appointments, or processing my thoughts. The proper term is "cognitive dysfunction" or "cognitive impairment," this inability to recall information can be extremely frustrating. These symptoms may come and go, but may also be continuous, making school or work difficult or even impossible in extreme cases. I am lucky that my lupus fog have gone away...

Anti-inflammatory medications help to relieve many of the symptoms of lupus by reducing inflammation and pain. Steroid medications work quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. They do this by lessening the immune system’s response. Prednisone is the most commonly prescribed steroid for lupus. And it is also the most hated! Steroids can produce a variety of side effects. The most common are changes in appearance (acne, a round or moon-shaped face, weight gain due to increased appetite, and hair growth). Steroids can cause fluid retention and a redistribution of fat, leading to a swollen face and abdomen, but thin arms and legs. Also, the skin becomes more fragile and bruises easily. I hated when I was on steroids-I always had the moon face and water retention in my ankles. Thank God, I didn't have acne. Plus the prednisone tasted nasty...Antimalarials improve lupus by decreasing autoantibody production, protecting against the damaging effects of ultraviolet light from the sun and other sources, and improving skin lesions. I take these too. If I ever get malaria I will already have the medication for it. Immunosuppressive drugs reduce your body’s ability to fight off infections, and increase the chances that you could develop viral infections. I take Imuran, which is an immunosuppressive drug that works like chemotherapy. I don't like the fact that my hair falls out more now. It's like a dog shedding it's fur. I also take aspirin to thin out my blood. My doctor is afraid that I will have blood clots.

People with Lupus are able to lead a long healthy life if they are on medication and is constantly monitored by their doctors (which I am).
I am pretty excited that Lonza is going to manufacture HGS and GSK’s Lupus Drug: Benlysta. This will be the first drug to treat Lupus in 50 years!

If you want to learn more about Lupus, please check out: http://www.lupus.org/

xoxo,
Kat