As little as 50 years ago, only half the people diagnosed with lupus were alive four years later. Today, you can live with this chronic disease in relative comfort for many years, thanks to medical progress and numerous treatment options.
Source: Adapted from Know Your Options: The Definitive Guide to Choosing The Best Medical Treatments, Reader
What is lupus?
Doctors in medieval times named this disease lupus because its hallmark facial rash reminded them of a wolf bite (“lupus” is Latin for wolf). Not everyone with lupus develops this inflammation, however. Other symptoms might include achy swollen joints, fever, headache, extreme fatigue, and skin rashes aggravated by sunlight on other parts of your body. Lupus can also lead to more serious problems, such as anemia, inflammation of the lungs or heart, and serious neurological problems. About half of those with this kind of systemwide (systemic) disease develop kidney complications.
These symptoms may seem disconnected, but they all originate in your immune system, which creates antibodies to fight infection. When you have lupus, your immune system turns against you, creating antibodies that attack your vital organs. These antibodies react with your own tissues. They form protein clumps called immune complexes, which build up and cause inflammation, tissue damage, and pain where they lodge. The most common form of lupus, systemic lupus erythematosus (SLE), can affect nearly every organ or body system. While the course of SLE is unpredictable, you can count on periodic flare-ups (called flares by specialists) followed by periods of remission which might last for months. Another form, discoid lupus erythematosus (DLE), primarily makes the skin blotchy.
Who is at risk for lupus?
The cause of lupus is unknown, but scientists think genetics sets the stage for sensitivities you develop later. Then, an unknown trigger—maybe an infection, antibiotics, ultraviolet light, or even hormones—unleashes your first lupus flare. You are more likely to get this disease if you are a woman between ages 15 and 45, and African-American, Asian, Hispanic, or Native American.
Treatment for lupus
The key to controlling lupus is to work with your doctor (usually a rheumatologist) to develop a plan to control symptoms. Your goals are to prevent flares, promptly treat those that occur, and prevent complications affecting your vital organs. In many cases, it’s possible to keep a steady course with healthy lifestyle choices. When your disease does flare, a number of prescription and OTC medications are useful for quickly getting it under control and easing milder symptoms. For serious complications, specialized therapies or even a kidney transplant may be required.
Medications for lupus
If you’re having a flare, you’ll need an oral or intravenous corticosteroid such as prednisone (Deltasone) or methylprednisolone (Medrol). These drugs reduce inflammation and slow your overactive immune system, bringing on a remission. High doses over long periods of time may have potentially serious side effects. However, your doctor will work to find the lowest possible dose. Nonsteroidal anti-inflammatory drugs (NSAIDs)—aspirin, ibuprofen (Motrin), naproxen (Aleve), and the prescription sulindac (Clinoril)—also reduce inflammation and relieve fevers. If these medicines upset your stomach, take them with meals, milk, an antacid, or a prostaglandin drug such as misoprostol (Cytotec). Or check out the newer COX-2 inhibitors—celecoxib (Celebrex)—which block stomach-inflaming substances.
If angry skin rashes are a problem, topical cortisone can be used short term. Antimalarial drugs, such as hydroxychloroquine (Plaquenil) or quinacrine (Atabrine), help relieve skin and joint symptoms and fever and are particularly effective for discoid lupus. However, they can damage your retinas, so have regular eye exams.
Immunosuppressant drugs, such as azathioprine (Imuran) and mycophenolate mofetil (CellCept), are used to treat severe flares in lupus patients with kidney problems or other complications. These drugs are reserved for serious situations because the price for this firepower may be a reduced number of white blood cells, a susceptibility to infections, and other adverse reactions.
Bad habits certainly don’t cause lupus, but good habits can help keep this disorder in check.
- Be alert for the first signs of a flare. Episodes are likely to follow a pattern. If you recognize a symptom—fatigue, joint pain, or feverishness—treat it promptly. This can minimize discomfort.
- Get plenty of rest. Sleep at least 10 hours a night, longer during a flare. When your body says it needs to rest, listen!
- Treat infections ASAP. Lupus and the drugs that control it make you more prone to strep throat, yeast infections, and viruses. At the first sign of any infection, contact your doctor.
- Exercise within your limits. It may seem counterintuitive, but exercise can make you feel less tired by building up your physical strength and endurance. Walking is energizing, but other good choices are swimming, water aerobics, and bicycling.
- Keep stress to a minimum. It worsens lupus symptoms. Look into meditation, deep-breathing exercises, and other relaxation techniques.
- Stay out of the sun. Sunlight or ultraviolet (UV) light can bring on a flare. When you go outdoors, wear a sunscreen of SPF 15 or higher, and cover up with a hat and long sleeves.
- Avoid allergens. Hair dye, makeup, and drugs can cause lupus to flare.
- Consult your doctor about pregnancy. Having lupus can present special risks, both to an unborn baby and to you. Get the facts about minimizing these hazards before you try to conceive.
Related Procedures for Lupus
If your joints are chronically weak and painful, physical therapy may help restore their range of motion and strength. If your blood tests show antiphospholipid antibody syndrome, in which antibodies react against a fat molecule found in cell membranes, a procedure called plasmapheresis (blood plasma exchange) can remove the harmful antibodies from your blood.
Questions for Your Doctor
- How can I avoid setting off lupus flares?
- Is there any medicine I can take instead of steroids?
- What are the chances I will need dialysis or a kidney transplant someday?
- Will I need to make big changes in my life because I have lupus?
Living with Lupus
If you’re living with lupus, here are a few quick tips to help you take control:
- Know your pain relievers. Although acetaminophen (Tylenol) may help you with pain and is kind to your stomach, it doesn’t reduce inflammation. You may need to test several different NSAID analgesics, such as aspirin, ibuprofen, and the prescription drug sulindac (Clinoril), to find which ones work best for you.
- Get enlightened about light. Ultraviolet-emitting lights (like those in tanning salons) may trigger flares.