Lupus - Symptoms

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The symptoms of lupus can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

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What are lupus symptoms and signs?

People with SLE can develop different combinations of symptoms and organ involvement. Common complaints and symptoms include fatigue, low-grade fever, loss of appetite, muscle aches, hair loss (alopecia), arthritis, ulcers of the mouth and nose, facial rash ("butterfly rash"), unusual sensitivity to sunlight (photosensitivity), inflammation of the lining that surrounds the lungs (pleuritis) and the heart (pericarditis), and poor circulation to the fingers and toes with cold exposure (Raynaud's phenomenon). Complications of organ involvement can lead to further symptoms that depend on the organ affected and severity of the disease.

Skin manifestations are frequent in lupus and can sometimes lead to scarring. In discoid lupus, only the skin is typically involved. The skin rash in discoid lupus often is found on the face and scalp. It usually is red and may have raised borders. Discoid lupus rashes are usually painless and do not itch, but scarring can cause permanent hair loss (alopecia). Over time, 5%-10% of those with discoid lupus may develop SLE.

Over half of the people with SLE develop a characteristic red, flat facial rash over the bridge of their nose. Because of its shape, it is frequently referred to as the "butterfly rash" of SLE. The rash is painless and does not itch. The facial rash, along with inflammation in other organs, can be precipitated or worsened by exposure to sunlight, a condition called photosensitivity. This photosensitivity can be accompanied by worsening of inflammation throughout the body, called a "flare" of the disease.

Picture of systemic lupus erythematosus (SLE or lupus) butterfly rash
Picture of a butterfly rash on the face, a characteristic sign of systemic lupus erythematosus (SLE)

Typically, with treatment, this rash can heal without permanent scarring.

Most people with SLE will develop arthritis during the course of their illness. Arthritis from SLE commonly involves swelling, pain, stiffness, and even deformity of the small joints of the hands, wrists, and feet. Sometimes, the arthritis of SLE can mimic that of rheumatoid arthritis (another autoimmune disease).

More serious organ involvement with inflammation occurs in the brain, liver, and kidneys. White blood cells and blood-clotting factors also can be characteristically decreased in SLE, known as leukopenia (leucopenia) and thrombocytopenia, respectively. Leukopenia can increase the risk of infection, and thrombocytopenia can increase the risk of bleeding.

Inflammation of muscles (myositis) can cause muscle pain and weakness. This can lead to elevations of muscle enzyme levels in the blood.

Inflammation of blood vessels (vasculitis) that supply oxygen to tissues can cause isolated injury to a nerve, the skin, or an internal organ. The blood vessels are composed of arteries that pass oxygen-rich blood to the tissues of the body and veins that return oxygen-depleted blood from the tissues to the lungs. Vasculitis is characterized by inflammation with damage to the walls of various blood vessels. The damage blocks the circulation of blood through the vessels and can cause injury to the tissues that are supplied with oxygen by these vessels.

Inflammation of the lining of the lungs (pleuritis) and of the heart (pericarditis) can cause sharp chest pain. The chest pain is aggravated by coughing, deep breathing, and certain changes in body position. The heart muscle itself rarely can become inflamed (carditis). It has also been shown that young women with SLE have a significantly increased risk of heart attacks due to coronary artery disease.

Kidney inflammation in SLE (lupus nephritis) can cause leakage of protein into the urine, fluid retention, high blood pressure, and even kidney failure. This can lead to further fatigue and swelling of the legs and feet. With kidney failure, machines are needed to cleanse the blood of accumulated waste products in a process called dialysis.

Involvement of the brain can cause personality changes, thought disorders (psychosis), seizures, and even coma. Lupus of the nervous system (neurologic lupus) can lead to damage to nerves cause numbness, tingling, and weakness of the involved body parts or extremities. Brain involvement is referred to as lupus cerebritis.

Many people with SLE experience hair loss (alopecia). Often, this occurs simultaneously with an increase in the activity of their disease. The hair loss can be patchy or diffuse and appear to be more like hair thinning.

Some people with SLE have Raynaud's phenomenon. Raynaud's phenomenon causes the blood vessels of the hands and feet to spasm, especially upon exposure to cold. The blood supply to the fingers and/or toes then becomes compromised, causing blanching, whitish and/or bluish discoloration, and pain and numbness in the exposed fingers and toes.

Other conditions that can accompany lupus include fibromyalgia, coronary heart disease, nonbacterial valvular heart disease, pancreatitis, esophagus disease with difficulty swallowing (dysphagia), liver disease (lupoid hepatitis), and infections.

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See what others are saying

Comment from: Mo5599, 19-24 Female (Patient) Published: April 11

I just recently got diagnosed with lupus. At first my joints would only hurt every once in a while, but now every day, it seems I have debilitating pain in almost every joint, especially when I wake up. The swelling and pain in my hands and feet make it hard to get a full night of sleep. I just started taking hydroxychloroquine which makes me extremely dizzy. I"m definitely having a hard time adjusting to lupus.

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Comment from: Shauna, 45-54 Female (Patient) Published: May 01

I"ve had joint pain for years. After I had my second child, I had a miscarriage in between, anyway I went to the doctor. And my description to the doctor was, I felt like I was 90. My initial test came back positive for lupus. However I was told I needed further testing. I was poked, prodded, and tested for almost 4 years before I was told that I had systemic lupus erythematosus (SLE). I had restless leg syndrome (RLS) in my legs and arms. My husband almost moved to the couch because of my arms jerking uncontrollably and I would hit him. I would fall without any warning. Once I fell and my chin hit directly into the wall almost knocking me out and I thought for sure my jaw was broken. I had migraines so severe that I couldn"t even walk to the car to go to the doctor to get shots to ease the pain. I have pain in my arms at times that I can"t move them from the weakness. My toe joints hurt so bad at times it feels like I"m being stung by a bee over and over. I have no feeling in some areas of some of my toes except for the bee sting pain. I"ve had an ulcer from the medication I"ve had to take. I have insulin resistance syndrome (IRS). I have spondylosis in my neck and thoracic spine. My spine has an area that is numb to the touch. I have vasculitis and my legs look horrible from my veins. I"ve had tumors removed from my back close to my spine. I had a tumor removed from between my eyebrows, after surgery I had a reaction and developed rhabdomyolysis and couldn"t walk without the assistance of a walker for over 2 weeks. However I am thankful that my heart muscle was not damaged from that. I had to have my gallbladder removed and spent three days in the hospital because I had severe pancreatitis at the same time. While in recovery I was doing well and then I stopped breathing. I had to be bagged to help me start breathing again. At one time I was taking 17 pills a day. I now take Plaquenil, Celebrex, medication for RLS, medication for IRS, and pain medication. When I get a migraine, I take Benadryl, Promethazine, and a pain medication to relieve the migraine.

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