Treatment for lupus is focused on managing symptoms

It can be difficult to diagnose lupus since its signs and symptoms often mimic those of other ailments. In other words, someone may have the disease but not know. PHOTOS | COURTESY

What you need to know:

  • It can be difficult to diagnose lupus since its signs and symptoms often mimic those of other ailments. In other words, someone may have the disease but not know.

In 2019, just before her 25th birthday, Peninah Nantume Namirembe, a TV personality, started getting throbbing headaches. At first, she thought the headaches were a result of taking long without updating her lenses prescription, which she did but without any change.
When the pain persisted, Namirembe went to hospital for tests. However, at many of the hospitals, she was dismissed with just a prescription and although she religiously took her medication, the headaches did not subside.
“Because my work involves travelling and getting engaged in activities such as hiking and nature walks, doctors attributed the headaches to fatigue and recommended bed rest,” Namirembe says. With time, Namirembe's pain intensified as did the strength of her medication, which would also just provide temporary relief. She also started suffering from persistent bacterial, viral and fungal infections.
“I thought the infections were normal since my friends had told me it was a side effect of consistently taking pain killers. However, when the infections persisted for most of the year, I sought further medical attention,” she says.
Severe symptoms
At the start of 2021, Namirembe was often ill and because she was not getting any better, she also suffered from depression.
“I was always falling sick with endless fevers and severe cough and flu. This caused anxiety and all I wanted was to be alone,” she says.
Because she was always a jolly person, her friends and family could not comprehend the mood swings. She had not told them about the ill health she had been suffering for more than a year now. Her appetite deteriorated and she could hardly sleep at night. However, she continued being secretive about her health.
“At work, I ran recorded shows, which made it difficult to notice my absence for almost three months,” she says.
However, things would soon become worse when she started suffering from extreme hair loss, swollen feet, joint pain and swelling in the eyes. The headaches also got worse with a completely different set of symptoms. The final stroke was her inability to pick up anything, including her mobile phone. 
“I had one boda boda man I trusted to take me anywhere I wanted to go. He would drop me at work but because I had lost the use of my hands, I trusted him to reach into my bag to get his payment. In most cases, I also relied on him for most of the tasks I could no longer perform,'' Namirembe recounts.
And with evident weight loss from 72kgs to 54kgs, she could not hide it anymore. Her mother, who had for some time suspected something was amiss, demanded an explanation. However, even Namirembe did not know what was wrong with her since clearly, she did not have the right diagnosis.  
“It was a hard time for us all. She could not do anything and was always nauseous,” her mother says.
In August 2022, Namirembe’s cousin took her to Nakasero Hospital in Kampala for further tests. She had darkened and had wounds all over her chest and abdominal area and because she could barely stand, she was offered a wheelchair as she waited in the long hospital queues. 
Several tests were carried and a Lupus diagnosis was confirmed. She was started on treatment which involves taking steroids and immune suppressants, among other medications.
Although the disease is incurable, with proper medication, Namirembe is vibrant and healthy. Except for the flare ups in the morning due to sensitivity to the sun, she is enthusiastic about the future. 
What is Lupus
According to Dr Moses Kakyama, an orthopaedic surgeon at CoRSU Hopital, Lupus occurs when the body's immune system attacks its own tissues and organs (autoimmune disease). Inflammation caused by this disease can affect many different body systems such as the joints, skin, brain, kidneys, blood cells, heart and lungs.
It can be difficult to diagnose lupus according to Dr Kakyama since its signs and symptoms often mimic those of other ailments. In other words, someone may have the disease but not know. A facial rash that resembles the wings of a butterfly unfolding across both cheeks is one of the most distinctive sign of lupus but may not occur in all cases of lupus.
''Most people with lupus have episodes (flares) when signs and symptoms get worse for a while, then improve or even disappear completely for a time," he says.
He adds that generally, the signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include fatigue, fever, joint pain, stiffness and swelling. Others include a butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body, shortness of breath, chest pain, dry eyes, headaches, confusion and memory loss.
Skin lesions that appear or worsen with sun exposure as well as fingers and toes that turn white or blue when exposed to cold or during stressful periods are the other signs.
What causes Lupus may not be known but the risk factors include age. Although lupus affects people of all ages, it is most often diagnosed between the ages of 15 and 45 years.  Being a woman and African increases the risk. 
Inflammation caused by lupus if not well managed can affect many areas of your body. Dr Kakyama says lupus can cause serious kidney damage and kidney failure is one of the leading causes of death among people with lupus.
Lupus may lead to blood problems, including a reduced number of healthy red blood cells (anaemia) and an increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels.
"If your brain is affected by lupus, you may experience headaches, dizziness, behaviour changes, vision problems, and even strokes or seizures. These affect your brain and nervous system. Many people with lupus experience memory problems and may have difficulty expressing their thoughts," he says.
Having lupus increases your chances of developing an inflammation of the chest cavity lining, which can make breathing painful. Bleeding into lungs and pneumonia also are possible.
When the blood supply to a bone declines due to lupus, it may lead to tiny breaks in the bone and eventually to the bone's collapse.
Lupus increases the risk of high blood pressure during pregnancy and this increases the risk of miscarriage or still births. To reduce the risk of these complications, doctors often recommend delaying pregnancy until the disease has been under control for at least six months. 
Lupus that is poorly managed can cause inflammation of your heart muscle, your arteries or heart membrane. The risk of cardiovascular disease and heart attacks increases greatly as well.
People with lupus are more prone to infection because both the disease and its treatments can weaken the immune system.
Diagnosis can be difficult because of the varied symptoms that may resemble symptoms of other conditions.
A doctor will ask about symptoms, carry out a physical examination, and take a personal and family medical history. The doctor may request some blood tests and other laboratory investigations.
Biomarkers are antibodies, proteins, genetics, and other factors that can show a doctor what is happening in the body or how the body is responding to treatment. They are useful because they can indicate whether a person has a condition even when there are no symptoms.
Lupus affects individuals in different ways. This makes it difficult to find reliable biomarkers. However, a combination of blood tests and other investigations can help a doctor confirm a diagnosis.
Blood tests
Blood tests can show whether certain biomarkers are present, and biomarkers can give information about which autoimmune disease, if any, a person has. As well as blood tests, further tests may include:
● Urine tests: Urine tests can help doctors diagnose and monitor the effects of lupus on the kidneys. The presence of protein, red blood cells, white blood cells, and cellular casts can all help to show how well the kidneys are working. For some tests, only one sample is necessary. For others, the person may need to collect samples over 24 hours.
● Tissue biopsies: A doctor may also request biopsies, usually of the skin or kidneys, to check for any damage or inflammation.
● Imaging tests: X-rays and other imaging tests can help doctors see the organs affected by lupus.
Treatment for lupus aims to reduce inflammation to protect organs from damage and prevent flare-ups. Each person is different, and their treatment plan may vary depending on the type of lupus, the extent of the inflammation and the condition of their organs.
A doctor may prescribe medications to treat complications that commonly arise in people with lupus, such as medications for seizures, antibiotics for infections, and vitamin D to help improve kidney function.
Home remedies
As inadequately treated lupus can lead to significant organ damage, doctors often recommend home remedies and lifestyle modifications in conjunction with medication.
One possible way a person may manage their lupus symptoms at home is through their diet. Although research is limited on how diet affects lupus, some evidence suggests it can play a role in disease management.
A person should aim to have a balanced and varied diet that contains fruit and vegetables, whole grains, and a moderate amount of protein. Lupus can vary greatly from one person to another, so a person with lupus should talk with a doctor about what diet may be best for them.
Some changes a person could make to their diet to help manage their condition include:
● Including omega-3 fatty acids.
● Including less cholesterol and less saturated fats.
● Including less sodium.
● Including vitamins such as vitamin D and vitamin B.