Patient Info
This section is designed to help you learn more about your kidney condition and the treatments you may receive. We have provided easy-to-understand summaries of different diseases and medicines to support you in making informed decisions about your care. The information here is not meant to replace advice from your healthcare team, but to give you confidence and clarity about your health. We also include links to trusted external websites if you would like to explore topics in more detail.
Diseases
IgA nephropathy (IgAN)
IgA nephropathy happens when the body’s immune system produces an antibody called IgA that becomes trapped in the kidney filters. Over time, this causes irritation and swelling in the kidneys. Some people only notice blood in the urine during infections, while others may develop protein leakage or high blood pressure. IgAN can progress slowly over many years, and treatment aims to reduce inflammation, control blood pressure, and protect long-term kidney function.
UK Rare renal registry / UK Kidney association / Kidney Care UK:
IgA Nephropathy Foundation:
Idiopathic Nephrotic Syndrome (iNS)
These conditions cause the kidneys to leak a large amount of protein into the urine, leading to swelling, foamy urine, and a higher risk of infections and blood clots.
Focal segmental glomerulosclerosis (FSGS)
Small sections of the kidney filters become scarred, leading to more severe or long-lasting protein leakage. It can be harder to treat and may require specialised medications.
Minimal change disease (MCD)
The kidney looks normal under a regular microscope, but the filters are disturbed at a microscopic level. It usually responds very well to steroids, and most people recover fully.
Membranous nephropathy (MN)
Membranous nephropathy is often caused by the body producing antibodies that attack the outer layer of the kidney filter. This makes the filter “leaky,” allowing protein to escape into the urine. Some patients improve without treatment, while others require medicines that calm down the immune system. Long-term monitoring is important to assess the risk of progression and tailor treatment at the right time.
Membranoproliferative glomerulonephritis (MPGN)
MPGN is a rare condition where the kidney filters become thickened and inflamed. This can lead to blood and protein in the urine and gradual loss of kidney function. MPGN can result from abnormal immune activity or complement system problems. Treatment focuses on identifying any underlying cause, reducing inflammation, and slowing long-term kidney damage.
Small vessel vasculitis (AAV, Anti-GBM)
ANCA-associated vasculitis (AAV) causes inflammation of small blood vessels throughout the body, including the kidneys. When the kidneys are affected, this can lead to sudden loss of kidney function. Patients may feel unwell with symptoms such as tiredness, weight loss, or sinus and chest problems. Treatment aims to stop the immune system from attacking the blood vessels and is most effective when started early.
Anti-GBM disease is a rare autoimmune condition where the immune system attacks the kidneys (and sometimes the lungs). It can cause blood in the urine, rapid loss of kidney function, or coughing blood if the lungs are involved. Urgent treatment is needed to remove the harmful antibodies from the blood and to calm the immune system to protect kidney function.
https://www.vasculitis.org.uk/about-vasculitis/what-is-anca
https://www.vasculitis.org.uk/about-vasculitis/anti-gbm-goodpastures-disease
Lupus Nephritis
Lupus nephritis occurs when lupus causes inflammation in the kidneys. It may cause swelling, high blood pressure, blood in the urine, or kidney impairment. Different patterns of lupus nephritis require different treatments, so a kidney biopsy is often needed. Treatment aims to reduce the activity of the immune system, protect the kidneys from long-term damage, and prevent flare-ups.
Transplant-related GN (tGN)
After a kidney transplant, some patients can develop inflammation in the transplanted kidney. This may be due to the original disease returning or a new immune condition developing. Symptoms include protein in the urine or a rise in creatinine. Early diagnosis and targeted treatment are important to protect the transplanted kidney.
Sarcoidosis
Sarcoidosis can affect the kidneys by causing inflammation or problems with calcium metabolism, leading to kidney stones or kidney damage. Treatment usually focuses on reducing inflammation with steroids or other medications. Most people improve with the right therapy.
Tubulointerstitial Nephritis
This condition affects the spaces around the kidney filters, usually due to medications, autoimmune diseases, or infections. Symptoms may include tiredness, low urine output, or changes in blood tests. Treatment usually involves removing the trigger and treating inflammation, which often leads to good recovery.
Others
We also diagnose and manage a wide range of less common glomerular and inflammatory kidney diseases. Each patient receives an individualised plan based on their diagnosis, symptoms, and long-term kidney health goals.
Treatments
Steroids
Steroids (such as prednisolone) work by quickly reducing inflammation in the kidneys. They are widely used for nephrotic syndrome, lupus nephritis, vasculitis, and many other immune-mediated kidney diseases. Steroids are effective but may have side effects, so doses are carefully monitored and reduced over time.
Rituximab
Rituximab is a targeted treatment that removes specific immune cells (B cells) involved in producing harmful antibodies. It is used for conditions like membranous nephropathy, FSGS, vasculitis, and lupus nephritis. It is given as an infusion and often allows patients to reduce or avoid stronger long-term immune medications.
Cyclophosphamide
Cyclophosphamide is a potent medicine used for severe kidney inflammation, especially in vasculitis and lupus nephritis. It helps quickly bring the immune system under control. Because of possible side effects, it is used for a limited period and often followed by a maintenance medication.
Mycophenolate Mofetil (MMF)
MMF is an immune-modulating medicine used long-term to control kidney inflammation. It is often used for lupus nephritis, some forms of vasculitis, and membranous nephropathy. MMF helps maintain remission with fewer side effects than stronger medications.
Tacrolimus
Tacrolimus is a calcineurin inhibitor that reduces immune activity and can significantly reduce protein in the urine. It is used in conditions such as FSGS and membranous nephropathy, and also helps prevent rejection in kidney transplant patients. Blood levels are monitored to maintain safe dosing.
Cyclosporine
Cyclosporine works similarly to tacrolimus by calming the immune system and reducing protein leakage. It is an alternative option when tacrolimus is not suitable. Regular blood test monitoring is required to ensure effective and safe treatment.
Azathioprine
Azathioprine is a maintenance treatment used after initial inflammation is brought under control. It helps prevent flare-ups in conditions such as lupus nephritis and vasculitis and is often well tolerated over the long term.
Dapagliflozin
Dapagliflozin is a kidney-protective medication that helps reduce pressure inside the kidney filters. It can slow down long-term kidney decline in many kidney diseases, even for patients without diabetes. It is usually taken once daily and is well tolerated.
Sparsentan
Sparsentan is a newer medication designed for conditions like IgA nephropathy and FSGS. It works by blocking two pathways that cause kidney damage, helping to reduce protein in the urine and protect the kidneys over time. It may be offered to patients who meet certain clinical criteria.
Kenpigo
Kenpigo is a newer treatment used for IgA nephropathy. It works by targeting pathways in the body that contribute to inflammation and scarring in the kidney filters. By calming this process, Kenpigo can help reduce protein leakage and protect the kidneys over time. It is usually prescribed for patients who meet specific clinical criteria and is monitored closely with blood and urine tests to ensure it is safe and effective.
We warmly invite patients, families, and carers to join our IKNET (Immune Kidney Network) Patient and Public Involvement (PPI) group. By sharing your experiences, ideas, and perspectives, you can help us improve research, services, and the support we offer to people living with immune-mediated kidney diseases. No medical knowledge is needed, just your lived experience and willingness to contribute. Your voice will help shape future projects, patient information, and clinical care. If you’re interested in joining or want to learn more, please get in touch