Lupus Nephritis

What is Lupus Nephritis?

Lupus, or systemic lupus erythematosus (SLE), is a disease where the immune system mistakenly attacks healthy parts of the body. It can affect the skin, joints, brain, and kidneys. When lupus affects the kidneys, it is called lupus nephritis. In this condition, the immune system attacks the kidneys, causing swelling and other urinary problems. If it gets worse, it can lead to kidney failure.

What are the symptoms or signs that it might be LN?

Lupus nephritis causes inflammation in the kidneys. The kidneys normally filter the blood and produce urine. In lupus nephritis, this inflammation affects how the kidneys work, allowing blood and proteins to leak into the urine. People with lupus nephritis may have hematuria (blood in their urine), high blood pressure, and notice their urine looks foamy due to elevated presence of proteins. Patients may also experience oedema (swelling in their legs, ankles, and feet).

How is LN typically treated?

There is no cure for Lupus Nephritis, so treatment focuses on managing symptoms. When active lupus nephritis is detected, doctors often recommend a renal biopsy (a test to examine the kidneys) to decide the best treatment options. Treatments may include medications like hydroxychloroquine, which helps with symptoms such as skin inflammation, joint pain, hair loss, tiredness, and mouth sores. People with lupus nephritis might also use corticosteroid creams for skin rashes and take anti-inflammatory drugs to reduce pain and swelling. Another goal of treatment is to reduce proteinuria (excess amount of protein in the urine), prevent kidney flare-ups, and protect kidney function. If corticosteroids do not work, doctors may use immunosuppressive medicines to help reduce damage and inflammation. Since people with lupus have a higher risk of blood clots, doctors might also suggest blood thinners, like warfarin, to prevent heart attacks or strokes. Other medications may be used to treat anemia, high blood pressure, and osteoporosis (bone loss). There are also lifestyle changes that can help manage lupus nephritis. People with lupus nephritis should wear sunscreen all year to protect their skin, as lupus can make the skin more sensitive to the sun and trigger flare-ups. Eating a balanced diet and exercising regularly can also help manage symptoms. Finally, it’s important to avoid smoking and second-hand smoke, as the chemicals in cigarettes can worsen lupus symptoms.

Where (in which countries or regions) is LN most prominent? What’s happening in the UK, USA, Canada, Caribbean and African continent ( any specific countries more than others?)

The highest number of people with lupus was found in Colombia, and the highest number of new cases was in Brazil. In North America, the number of new cases of lupus has been going up each year. Women are much more likely to get lupus than men—9 out of 10 people with lupus are women. Lupus is also three times more common in African American women than in white women. However, it is less common in black Africans.

What do patients with LN need to know from medical professionals?

Being diagnosed with lupus nephritis (LN) is a major life change, and it’s important for healthcare professionals to help patients understand their condition. Patients should learn about warning signs, like blood in the urine, which may signal disease progression. It’s also important for patients to know about their treatment options, along with the side effects and risks of each. Sticking to treatment plans and making lifestyle changes, like eating healthier and exercising, should be encouraged. While it’s good to offer support, healthcare professionals should also prepare patients for the long-term reality of living with LN, helping them manage their condition with confidence and understanding.

What do [medical] professionals need to know when diagnosing, treating and caring for LN patients?

When diagnosing and treating lupus nephritis, doctors must understand that the disease is complex and can vary from person to person. Lupus can present with a range of symptoms, such as unexplained rashes, long-lasting fever, tiredness, and joint pain. Early detection is very important because untreated lupus can lead to serious problems like lupus nephritis. Monitoring for flare-ups is also crucial since lupus is a long-term disease with periods where symptoms get worse and then improve. For lupus nephritis patients, kidney function should be checked often because untreated nephritis can lead to kidney failure. This is especially important for Black patients, who are at higher risk for severe complications, including kidney disease and heart problems. Racial and ethnic differences are a concern in lupus care. Studies show that Black Americans with lupus often have more severe symptoms, higher death rates, and a greater chance of dying early compared to White patients. There is no cure for lupus, but personalized treatment based on a patient’s symptoms and risks is essential. Patients should learn to recognize early warning signs of flare-ups and stay in regular contact with their doctors to manage their condition and avoid complications.

What do non-medical and “untrained” caregivers and family members need to know when treating and caring for LN patients?

First, it’s important for caregivers to understand what lupus nephritis (LN) is. Being familiar with the key symptoms and treatments helps caregivers support patients in following their care plans. Non-medical caregivers can also help by encouraging LN patients to join support groups. These groups give patients a sense of community and
let them connect with others facing similar challenges, which can help reduce feelings of anxiety and loneliness. Depression and anxiety are common in people with LN. Caregivers should be aware of the increased risk of these conditions and offer kind support. If you notice changes in the mood or behavior of someone with LN, encouraging them to seek professional help can be one of the best ways to support them. While emotional challenges can make managing LN harder, they can be treated with the right mental health care, improving
overall well-being.

Which professionals usually work together to care for LN patients?

Healthcare professionals often help lupus nephritis (LN) patients with treatment. Key professionals include:

Rheumatologists – These doctors specialize in autoimmune diseases and are usually the main doctors for lupus patients. They manage medications like immunosuppressants and steroids, which are often needed for LN. ​(School of Medicine and Public Health)​ (Lupus Foundation of America).

Nephrologists – These are kidney specialists who play an important role in lupus nephritis care. They monitor kidney health, adjust treatments, and may do kidney biopsies to check for damage. ​(Lupus Foundation of America)​(School of Medicine and Public Health).

Dermatologists – Since many lupus patients have skin issues like rashes, dermatologists help manage these symptoms and make sure they are caused by lupus and not another skin condition. Lupus Foundation of America).

Primary Care Physicians – These doctors help coordinate overall care, make sure patients are regularly monitored, and address any other health issues the patient may have. (School of Medicine and Public Health).

Nurses and Nurse Practitioners – Nurses help monitor symptoms, manage medications, and teach patients about their condition. They make sure patients follow their treatment plans and provide ongoing support. ​(Lupus Foundation of America). 

Mental Health Professionals – Patients with lupus nephritis may face mental health challenges like anxiety or depression. Psychologists and psychiatrists can help manage the emotional effects of living with a chronic illness. ​(Lupus Foundation of America)​ (School of Medicine and Public Health).This team works together to manage lupus nephritis, aiming to protect the kidneys and help patients deal with the many aspects of the disease.

When someone is diagnosed with LN, what should be the first things they do…what should they expect over the first year for example?

Systemic lupus erythematosus (SLE) is an autoimmune disease that affects different parts of the body, like the skin, joints, brain, kidneys, and more. Lupus nephritis (LN) happens when the immune system attacks the kidneys because of SLE. Symptoms of SLE and LN usually develop slowly, but finding and treating them early is important to prevent kidney damage. SLE often affects the joints in the hands, wrists, and knees, causing joint pain, swelling, or arthritis. After being diagnosed with SLE, people may have symptoms like chest pain, tiredness, fever, hair loss, weight loss, mouth sores, swollen lymph nodes, and sensitivity to sunlight. A common sign is a “butterfly rash” on the cheeks and nose. If other parts of the body are affected, symptoms can vary. For example, nervous system symptoms may include headaches, weakness, changes in sensation, vision problems, and personality changes. In the stomach, there might be pain and nausea. Breathing problems or coughing up blood can happen if the lungs are involved. Heart and kidney disease are also common with SLE. Swelling in the legs and blood issues may also occur. LN symptoms may appear at the same time as SLE symptoms or shortly after. Signs of LN include dark, foamy, or bloody urine, high blood pressure, weight gain, frequent urination, and swelling in the feet, ankles, or legs. The first warning signs are foamy or bloody urine. If you notice these symptoms, it’s important to tell your doctor, especially if your urine looks different. The doctor will examine you and ask about your medical history and when you first noticed the symptoms. Tests used to diagnose SLE include blood tests, urine tests, ultrasounds, and possibly a biopsy of the skin or kidneys. After being diagnosed with LN, a nephrologist and rheumatologist will create a treatment plan based on your needs. You will likely have frequent blood and urine tests during the first year to check your kidneys. Your doctors will also talk to you about medications and how well they are working. Some medications may cause side effects, and changes to your diet might be recommended. LN flare-ups (new or worsening symptoms) can happen, and it’s important to tell your doctor if this occurs so they can treat it quickly.

What conversations are necessary between medical professionals, patients, and caregivers? Diet? Exercise? Mental Health?

To provide complete care, open conversations between doctors, patients, and caregivers are important when managing lupus nephritis (LN). It’s important to inform patients and caregivers about following a kidney-friendly diet, which includes less salt, protein, and monitored potassium levels, based on the patient’s condition. Exercise should also be discussed, with patients encouraged to do moderate, low-impact activities. Access to mental health support is also very important. Both patients and caregivers may feel emotional stress, so having access to support, like counseling or support groups, can help them cope with the challenges of living with a long-term illness. It’s also key to focus on taking medications as prescribed and keeping track of symptoms. Patients and caregivers need to understand the treatment plan and know what to do if symptoms change or the disease gets worse. Clear communication between the healthcare team, patients, and caregivers helps manage expectations and prepare for any future issues.

What is the link between LN and Regenerative Medicine, if any?

Lupus, specifically systemic lupus erythematosus (SLE), is an autoimmune disease that can significantly affect various organs, particularly the kidneys, leading to conditions like lupus nephritis. The link between lupus and regenerative medicine encompasses several areas aimed at addressing tissue damage and immune dysregulation. Regenerative medicine focuses on repairing or replacing damaged tissues through techniques such as stem cell therapy, including hematopoietic stem cell transplantation (HSCT), which has shown promise in resetting the immune system in severe lupus cases. Additionally, research is exploring the use of mesenchymal stem cells (MSCs) to promote tissue repair and modulate the immune response, given their anti-inflammatory properties and ability to differentiate into various cell types. Biologic therapies targeting specific immune pathways are also being developed to reduce inflammation and tissue damage in lupus patients. Furthermore, advances in gene therapy and personalized medicine emphasize tailored treatment approaches, potentially using a patient’s own cells to minimize immune rejection. This personalized approach may be enhanced by identifying biomarkers that predict disease progression or treatment response, ultimately improving outcomes for individuals with lupus.

What is the link between LN and Kidney disease?

Lupus, especially systemic lupus erythematosus (SLE), is an autoimmune disease that can seriously affect many organs, especially the kidneys. This can lead to a condition called lupus nephritis. The connection between lupus and regenerative medicine involves ways to help repair tissue damage and fix problems with the immune system. Regenerative medicine looks at ways to heal or replace damaged tissues. One method is stem cell therapy, like hematopoietic stem cell transplantation (HSCT), which can help reset the immune system in severe cases of lupus. Researchers are also studying mesenchymal stem cells (MSCs) because they can help repair tissues and change the immune response. These cells have anti-inflammatory properties and can turn into different types of cells. There are also new treatments called biologic therapies that target specific parts of the immune system to reduce inflammation and damage to tissues in lupus patients. Advances in gene therapy and personalized medicine focus on creating treatment plans that fit each patient’s needs. This can include using a patient’s own cells to reduce the risk of the immune system rejecting the treatment. Identifying biomarkers—substances in the body that can show how the disease is progressing or

Are there common factors (preventative or maintenance) between patients who must attend to optimal kidney health and LN?

Managing Lupus Nephritis (LN) and Chronic Kidney Disease (CKD) The exact cause of lupus is often unknown. However, it has been linked to certain medications, too much sun exposure, and stress. For both LN and CKD, it’s very important to avoid too much sun, especially without protection. For people with LN, being in the sun without sunscreen can make their symptoms worse. For those with CKD, too much sun can increase the chance of getting skin cancers that are not melanoma.

1. Eating a Well-Balanced Diet
   Even though there isn’t a specific “lupus diet” or “CKD diet,” people with both conditions can benefit from a balanced diet. This means eating lots of fruits and vegetables and choosing foods that are low in harmful additives. Eating healthy can help protect against other health problems, like diabetes and atherosclerosis, which can worsen lupus or other kidney issues.
2. Regular Exercise
   Just like diet, regular exercise is very important for managing both lupus and CKD. Getting physical activity—whether it’s a 30-minute run or an hour-long walk—can help lower high blood pressure, reduce obesity, and ease feelings of depression and anxiety.
3. Avoiding Smoking
   Smoking is harmful to people with lupus nephritis (LN) and chronic kidney disease
   (CKD). The toxic chemicals in cigarettes can make both conditions worse, and secondhand smoke is just as dangerous. It is strongly recommended to avoid smoking and staying in places with a lot of smoke, like busy cities or industrial areas.
4. Working with Healthcare Providers
   Finding and managing lupus nephritis (LN) and chronic kidney disease (CKD) early is very important for successful treatment. If you notice any new or worrying symptoms, it’s important to contact a healthcare provider right away. Getting help quickly can make a big difference in managing the disease.
5. Building a Support System
   Staying connected with family, friends, and coworkers can really help a patient cope with chronic kidney disease (CKD) and lupus nephritis (LN). Having social support is known to improve health outcomes for people with chronic conditions. Talking to loved ones can build emotional strength and lead to better overall health.

Why is this relevant for ACB communities/ How is lupus different in black patients, compared to white patients or others? 

Lupus Nephritis (LN) is specifically relevant to African, Caribbean, and Black (ACB) communities due to the higher prevalence and increased severity. Black patients with Lupus Nephritis face unique challenges compared to other racial groups. Lupus Nephritis is more common and often more aggressive in ACB populations, especially among Black women, who are three times more likely to develop lupus than White women. The disease tends to be more severe in ACB patients, leading to higher rates of kidney failure, neuropsychiatric symptoms, and heart complications like cardiovascular disease. Barriers to healthcare access, limited research representation, and socioeconomic cha