Lupus is a chronic autoimmune disease that causes inflammation and a wide array of symptoms. Symptoms can come and go, which can make it hard to realize anything serious is going on. Anyone can get lupus but it’s most often diagnosed in biological females between 15 and 45 years old.
This article looks at the early symptoms, how lupus is diagnosed, the outlook, and treatment options.
Autoimmune disease is a case of mistaken identity. When functioning properly, your immune system recognizes viruses, bacteria, and fungi as dangerous invaders. It then creates specialized cells to destroy them.
In autoimmune diseases, it wrongly identifies a healthy tissue or substance as something dangerous. It then attacks and tries to destroy it. Medical science doesn’t yet understand why this happens.
Some autoimmune diseases target a narrow range of healthy tissues. However, lupus can attack a wide range of body parts, which include joints, skin, internal organs, and blood vessels.
Some symptoms are common, though, and are more likely to develop early in the disease. That said, most people don’t have all of these symptoms. Each person has their own unique blend of symptoms and severities.
About 50%-90% of people who have lupus have fatigue. You may find yourself wanting an afternoon nap or needing more sleep at night.
Some people with lupus find they feel less fatigue if they get regular light or moderate exercise or stay active.
If fatigue interferes with your daily life, talk to your healthcare provider about what might help.
It’s common for people with lupus to have recurring low-grade fevers (under 101 degrees Fahrenheit). Often, the temperature increases just as you’re going into a lupus flare.
An estimated 1.5 million Americans have lupus. Worldwide, it’s believed to affect at least 5 million people. Around 90% of them are women.
About 45% of people with lupus have some degree of alopecia (hair loss) at some point. It’s most common early on, and it’s often the first symptom people notice.
While this symptom isn’t debilitating, it can cause stress and problems with self-esteem. It’s believed to occur because of autoimmune damage to the hair follicles. A form of the disease called discoid lupus can cause permanent follicle damage. In most cases, the hair loss isn’t permanent.
You may also lose hair due to lupus-related rashes or sores on your scalp.
A distinctive rash affects around 50% of people with lupus. It’s technically called a malar rash. However, it’s commonly referred to as a butterfly rash because it falls across your nose and cheeks in the shape of a butterfly. The rash is also:
For some people, the rash heralds an oncoming flare. Other people may get it after sun exposure.
About half of people with lupus become sensitive to the ultraviolet (UV) rays of sunlight, plus UV-A and UV-B radiation from other sources. This includes artificial lighting.
The sun may cause rashes, an extreme sunburn-type reaction, and flares of lupus symptoms unrelated to the skin.
Sunscreen is a necessity for avoiding these symptoms. Experts recommend even putting it on skin that’s covered by clothing.
Several other skin symptoms are possible with lupus. They include:
Let your healthcare provider know about any skin symptoms you have. They may not be dangerous on their own, but they can be a sign of disease activity.
Joint pain and stiffness are common. You may find they’re worse when you wake up in the morning and loosen up over time or with a warm shower.
This is caused by inflammation in your joints (arthritis). The pain can range from mild to debilitating. In some cases, lupus may cause permanent joint damage. However, this is less likely in lupus than in rheumatoid arthritis (RA), another autoimmune disease mainly affecting the joints.
Achy, tender muscles are an early lupus symptom. You may also have muscle weakness at times.
Tendonitis (inflammation of the tendons) is also common. It often develops in the elbows, fingers, and shoulders.
Anemia is a blood disorder that involves low levels of hemoglobin. About half of people with lupus experience it. Hemoglobin is a protein in your red blood cells. Its job is to deliver oxygen to all of your tissues. Symptoms of anemia include:
Anemia may be caused by disease activity, inflammation, or not getting enough iron in your diet.
You may notice that your hands and feet get “puffy” or swollen at times, or the swelling may be constant. Lupus may cause or contribute to this in a few ways.
If the immune system attacks your kidneys, it can cause inflammation that prevents proper kidney function. That can lead to a buildup of fluids in your body, which is called edema. It can affect your whole body but is most common in the feet, ankles, legs, and around your eyes.
Lupus can also cause pain in the hands and feet due to symptoms and conditions that are common in people with lupus, including:
Your healthcare provider can help determine what is causing the symptoms in your hands and feet and how to treat them.
An estimated 10% of people with lupus have problems with dry mouth and eyes. This is due to a common overlapping condition called Sjögren’s syndrome.
Sjögren’s syndrome is an autoimmune disease that affects moisture-producing glands. The dryness can be serious enough to cause discomfort, permanent damage to the glands, scarring in the eyes, and dental problems.
Sjögren’s can lead to fatigue, muscle and joint pain, and, in rare cases, blood cancers such as non-Hodgkin's lymphoma. It can also affect organs.
To prevent these problems, if you have dry eyes and mouth, talk to your healthcare provider about diagnosing and treating Sjögren’s syndrome.
Gastrointestinal (digestive) problems are common in lupus. The most common issues are:
You may have symptoms such as:
These symptoms are often caused by inflammation of the esophagus. Weak swallowing muscles may also contribute to these symptoms.
No single test can diagnose lupus. You’ll likely be tested for many things before your healthcare provider reaches a lupus diagnosis.
Tools your provider may use include:
Other conditions your healthcare provider may check for include:
Lupus can’t be cured, but it can be treated and well-managed. It’s become rare for lupus to be fatal. In fact, as many as 90% of people with the disease are expected to have a normal life span.
Your lupus may be mild or severe. It tends to flare up when symptoms are more pronounced, and then remit when symptoms are milder. The frequency and severity of flares varies greatly from one person to the next.
A healthy lifestyle can also help you manage your illness.
The goals of lupus treatment are to prevent symptom flares, manage symptoms, prevent organ damage, and prevent complications.
Medications for lupus are meant to:
The healthier you are, the better you’ll be able to manage your lupus symptoms. A healthy lifestyle includes:
Your healthcare provider can help you set healthy goals and come up with strategies to help you achieve them.
If you have symptoms that come and go and could be caused by lupus, see your healthcare provider. Once you’re diagnosed, you should call your healthcare provider about worsening flares, side effects of new medications, and not getting better or worse despite a medication change.
Lupus can cause a wide variety of early symptoms, which include fatigue, butterfly face rash, skin changes, joint pain, and more. Both symptoms and their severities vary greatly from one person to another. Expect multiple tests to be done as your healthcare provider rules out other possible illnesses and looks for markers that suggest lupus.
Lupus may be a daunting diagnosis, but it can be good to put a name to the symptoms you’ve been experiencing. Lupus is a condition you should take seriously. However, newer treatments and research have made for a much better prognosis than in the past. Working closely with your healthcare provider and learning how to manage your illness can help you live well with lupus.
Untreated lupus can cause life-threatening damage to your kidneys, heart, and lungs. Before treatment was available, less than half of people with lupus survived longer than five years. Now, the five-year survival rate is higher than 95%.
Yes, you can. If mild symptoms come and go, you may mistake them for an acute (temporary) illness or simply being run-down. Tell your healthcare provider if you’ve had recurring symptoms that may point to lupus.
Lupus can be misdiagnosed as Behçet syndrome, fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), several forms of arthritis, and other autoimmune diseases.