Lupus and you: What you need to know
Lupus affects an estimated 1.5 million Americans though most people know very little about the disease, which can be difficult to diagnose.
Systemic lupus erythematosus (SLE), known simply as lupus, is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue and organs. Inflammation caused by lupus can affect many different body systems—including your joints, skin, kidneys, blood cells, brain, heart and lungs.
“Most people have heard of an autoimmune illness, but what gives a patient pause and worry is that lupus can affect any organ or tissue in our body,” says rheumatologist Christopher Parker, DO, “so it’s very much unlike other autoimmune illnesses which focus on a single tissue or organ to damage.”
Due to the systemic nature of lupus and the different organs and tissues that can be affected, lupus is extremely heterogeneous—meaning no two lupus patients are alike, says Dr. Parker, who practices at Austin Diagnostic Clinic in Austin, Texas.
Discerning whether a patient has a systemic autoimmune illness, such as lupus or rheumatoid arthritis, as opposed to a focal autoimmune illness, such as Hashimoto’s Thyroiditis which only targets the thyroid gland, is what rheumatologists are trained to do.
“First, I look for evidence of the immune system being the culprit by looking for inflammation in the blood or body,” says Dr. Parker. “There are viral infections, for example, that may look like lupus. Parvovirus B19, HIV or Hepatitis C are examples. The most important tool in my toolbox is a thorough history and physical. I then use additional lab testing to exclude lookalikes (such as infections and cancers) which can get you going down the wrong pathway.”
If the immune system is involved, the next step is to test for any abnormal antibodies being produced. It can be very helpful to look for abnormal antibodies in the blood, some of which are very specific to lupus, such as double-stranded DNA antibodies and Smith antibodies. If a patient has those, they have lupus, says Dr. Parker, though patients who do not produce these specific antibodies may still have lupus. That is where the investigative skills of a rheumatologist come into play.
“The footprint of systemic autoimmunity is all over the place if you take the time to scrutinize it,” says Dr. Parker. “As an osteopathic physician, I look at the big picture and take my time to get a thorough medical history and physical exam.”
Dr. Parker also follows the whole-person approach of osteopathic medicine by talking to his patients about the importance of diet and nutrition, regular exercise, sleep, and dealing with stressors that impair quality of life, such as marital stress.
Symptoms of lupus
The signs and symptoms of lupus that a patient experiences will depend on which body systems are affected by the disease. The most common symptoms include:
- Joint pain, stiffness and swelling
- Butterfly-shaped rash on the face as well as other rashes throughout the body
- Skin lesions that appear or worsen with sun exposure (photosensitivity)
- Fingers and toes that turn white or blue when exposed to cold (Raynaud’s phenomenon)
- Shortness of breath
- Chest pain
- Oral ulcers
- Headaches, confusion and memory loss
While some people are born with a tendency toward developing lupus, this does not guarantee that the disease will be triggered. Environmental triggers can be infections, certain drugs, stress or even sunlight.
Some of Dr. Parker’s lupus patients come in worrying about their children developing the disease, but the hereditary component is only part of the picture. While someone is more susceptible to developing lupus if they have an immediate relative with the disease, that does not guarantee that they will.
Is it hereditary?
“If a mom has lupus, for example, then her child has a 1 in 20 (5 percent) chance of developing lupus. For identical twins, with the exact same genetics, if one twin has lupus, the chances of the other twin developing it are only 50 percent,” says Dr. Parker.
I have tools in my toolbox that suppress the immune system or modify it in varying degrees, so it’s very important for me to take the time to understand how sick a lupus patient is.
Hormones play a role, with lupus being 10 times more common in women than in men. “We start seeing the difference when girls become women and hit their child-bearing years,” says Dr. Parker.
In fact, most lupus cases occur in women 15 to 45 years old.
Lupus is a chronic illness, which means it can’t be cured but it can be managed to induce remission. Treatment options vary depending on the organs involved. The most serious manifestations of lupus involve the major organs like the kidneys, brain, heart or lungs. Lupus flares can be mild, moderate or severe, though most cases of lupus are mild, according to Dr. Parker.
“I have tools in my toolbox that suppress the immune system or modify it in varying degrees, so it’s very important for me to take the time to understand how sick a lupus patient is in order to gear the treatment to that,” says Dr. Parker. “If it’s your heart or brain or any major organ being affected, then we have to go after it full-speed, but if it’s a rash, we don’t need something giant for that.”
Drugs used to treat lupus include:
- Nonsteroidal anti-inflammatory drugs (NSAIDS) to decrease joint pain, fever and inflammation.
- Antimalarial drugs such as Hydroxychloroquine (Plaquenil) are recommended for all lupus patients to treat symptoms such as arthritis, fatigue, rashes and mouth sores.
- Corticosteroids and immune suppressants for more serious and life-threatening complications such as kidney inflammation or heart and lung involvement.
- Biologics: Belimurab (Benlysta) was FDA-approved in 2011 for the treatment of mild lupus in adult patients.
“It’s about using the appropriate strengths and types of medications to suppress the immune system. It’s a chronic illness and a work in progress,” says Dr. Parker. “You should see your doctor when you’re sick and when you’re well so we can figure out a patient’s sweet spot and adjust the medications as needed. “