Living with lupus

Lupus is a long-term autoimmune disease. The body’s immune system becomes hyperactive and attacks normal and healthy tissue. It is often misdiagnosed, or underdiagnosed due to the broad symptoms.

How does it present?

Lupus presents with varying symptoms including joint and muscle pain – especially in the small joints of the hands and feet. The pain tends to move from joint to joint and may at times cause permanent damage, or deformation of joints.

It’s common for a rash to develop on parts of the body that are exposed to the sun, including the face, wrists and hands. A butterfly-shaped rash over the cheeks and the bridge of the nose is especially common.

Some people with lupus notice that their fingers change colour in cold weather, going first very pale, then blue and finally red. This is called Raynaud’s phenomenon and is caused by narrowing (constriction) of the blood vessels, which reduces blood supply to the fingers or toes. Hair loss is common and can be severe in some people with lupus, but once a flare-up is brought under control the hair will usually grow back.

Around one in three people with lupus have significant inflammation of the kidneys, and kidney damage can sometimes occur. Kidney inflammation can be treated successfully in most patients if it's identified early with regular urine, blood pressure and blood testing by a doctor.

Lupus also directly affects the heart and lungs causing inflammation in the lining tissues around the heart and lungs, both of which cause breathlessness and sharp pains in the chest.

Are there triggers that can worsen the condition?

Many trigger factors have been identified to lead to lupus disease flares. These include ultraviolet light whereby exposure to direct sunlight is thought to trigger flares. Specialists advise patients living with lupus to cover up, or use sunscreen prescribed for their condition.

When estrogen levels are high, for instance before menstruation, many patients express an increase in symptoms. Fatigue, pain, and cognitive dysfunction are some of the common complaints during these times of hormonal surge.

Concurrent infections especially with certain viruses have also been postulated to lead to lupus flares.

How can these patients be helped?

Dealing with any chronic disease can be emotionally stressful. Lupus can directly involve the brain and cause symptoms such as memory problems, difficulty concentrating, mood swings and confusion. A large number of patients may suffer from depression. Depression and other associated psychological disorders should be actively treated.

Patients are encouraged to take up healthy behavior activities such as eating healthy and balanced diets, exercises, and smoking cessation.

Patients should be educated on the importance of following the importance of drug compliance as poor compliance can trigger disease flares. Most patients however fall off the wagon due to the cost of some of the medication. This worsens the patient's condition.

Although the Covid-19 pandemic has put a strain on the healthcare system globally, people living with lupus should take extra precautions to avoid exposure to the virus, since they are thought to be more vulnerable to viruses and developing other illnesses. Lupus patients are encouraged to take the covid-19 vaccination.

Specialists need to maintain a high index of suspicion based on the clinical presentation by the patient. This will help guide on tests to be done to check antibodies and enable further evaluation of the presented disease. Primary level medical facilities may not have the required testing equipment hence should refer patients to tertiary, or secondary hospitals.

What support is needed?

Lupus can be a serious life-altering and sometimes fatal disease that requires in-depth understanding and support for the affected persons. Therefore, it is the responsibility of the unaffected and those affected to join hands and get involved in doing whatever it takes especially financing treatment to fight this unpredictable and commonly misunderstood disease.

Management of lupus can be quite expensive, often requiring multiple tests conducted during diagnosis and management not to mention long-term medication use. Patients living with lupus require all the support from the family, friends, employers and even at the policy level.

The Ministry of Health, Treasury and the National Hospital Insurance Fund (NHIF) should come up with measures to support the treatment of this disease including insurance coverage and other incentives that will facilitate the lowering of the cost of treatment.

Dr Otieno is a consultant rheumatologist at Aga Khan University Hospital