Read our expert panel’s answers to this community-generated question.
Mindy Banks, MD
Rocky Mountain Pediatric Kidney Center
FSGS, or focal segmental glomerulosclerosis, is a diagnosis that is made based on kidney biopsy often after it is noted that a person has high amounts of protein in the urine, high cholesterol, and/or swelling. Hypertension and progressive kidney dysfunction can also be a part of the disease. FSGS is really a descriptive term where scarring is found in segmental portions of the some of the filtering units of the kidney, also known as “glomeruli”. Because it is a descriptive term, there are actually many different underlying causes, including immunologic (essentially “autoimmune” in nature, often responsive to medications that suppress the immune system), genetic, viral (such as HIV), obesity, severe prematurity with intrauterine growth restriction, and even related to scarring from other primary disorders, such as lupus. Because there is such a wide range of causes of FSGS, there are also varying approaches to treatment.
Often, medications such as prednisone or other steroids are first-line therapies. It is important to take these medications as prescribed and not miss doses because these medications can affect the normal functioning of the adrenal glands. Therefore, a person can become quite sick if doses are missed without their doctor knowing. Not taking medications as prescribed may also decrease their efficacy. Calcineurin inhibitors (tacrolimus and cyclosporine), are also commonly prescribed. These medications are time-sensitive and must be taken every 12 hours apart to achieve appropriate levels and not risk toxicity. These medications also have many significant interactions with food you may eat or other medications you may take. Other immunosuppressive therapies have been tried, including mycophenolate (CellCept), rituximab, plasmapheresis, LDL pheresis, and abatacept, each with its own side-effect profile. Being your own advocate and discussing options in detail with your provider is important to make sure you understand the medications you are taking, how to take them, and what the risks are. Without this knowledge, you may not be getting the medications’ full benefit and be putting yourself at unnecessary risk.
Non-immunosuppressive interventions are also important. ACE inhibitors (such as lisinopril or enalapril) or ARBs (such as losartan) are blood pressure medications that are also useful to help reduce the protein in the urine by preferentially decreasing pressure inside the filtering units of the kidneys. Statins, which are high cholesterol medications, can also be very helpful. Water pills such as Lasix/furosemide may also be necessary to control swelling.
Good diet and exercise are also important parts of the equation. Restricting sodium in the diet helps reduce the amount of diuretic that may be needed and thus, limit side effects. A low-sodium diet can also help with hypertension. Protein is not usually restricted if someone is spilling significant amounts of protein in the urine. Controlling obesity also limits the stress on the kidneys and can slow progression of the FSGS. Certainly, avoiding smoking is critical to the lifespan of any kidney.
Having an FSGS diagnosis can profoundly impact a person’s life. However, it is important to know that you have the power to make a difference in your health. It is important to work with your providers to come up with a healthcare plan that works individually for you. Find a team that you trust and communicate well with. Be involved and be your own advocate. Lastly, find a support group to help you through this. Treating your mental health is just as important as treating your physical health. You are not alone and you can do this!
Dr. Mindy Banks is board-certified in pediatrics, internal medicine, adult nephrology and pediatric nephrology. Her combined internal medicine/pediatrics training was at Nationwide Children’s Hospital in Columbus, Ohio. She continued her medical training in the Midwest with fellowship at Northwestern University Hospital and Lurie Children’s Hospital in Chicago. Her medical practice focuses on children and young adults with the whole spectrum of kidney diseases ranging from frequent urinary tract infections to hypertension, nephrotic syndrome, dialysis and post kidney transplant care. She lives in Denver, Colorado with her husband and 3 boys. Besides nephrology, her life is spent either with sticky fingers from crafting or baking or sitting sidelines at a soccer game.
Diane K. Jorkasky, MD, FACP
Having been in clinical research for 30 years as well as having been in practice in nephrology, I have seen as new medicines have come to make a huge difference in patients’ lives. Unfortunately, few of those medicines have benefited kidney disease. When I advise a patient on how best to manage their disease, I think about how I advise my own parents.
The first is to make sure you read and know as much about the disease as you can. You have to do your homework. But you have to be careful as there is a lot of misinformation out there, especially on the internet. I would turn to sources such as NephCure Kidney International or other patient advocacy organizations as they provide extremely important and correct information to patients. The patient with the disease is always first in their minds. Do not be afraid to ask your doctor questions! A good doctor always takes the time to speak to their patients, no matter how busy they are. Write down your questions and take the list with you when you see your doctor. If the doctor ignores your questions or dismisses them, I would look for another doctor.
The second thing is to ensure that you follow the instructions that your doctor recommends. All kidney diseases, regardless of cause, will get worse if your blood pressure is abnormally high, for example. Taking your blood pressure as prescribed and watching your diet is extremely important for patients with kidney disease and Nephrotic Syndrome.
Finally, it is important to ask your doctor about clinical trials that may be ongoing or are about to start for new medicines that could benefit your kidney disease. Many of the current medicines used in kidney disease have severe side effects, like prednisone. Do not assume that your doctor knows what new medicines may be available for use in a clinical trial. NephCure and some, but not all, disease advocacy websites may list the drugs, the studies and the nephrology practices in the country where trials are being conducted. The only way that old, poorly effective and very risky drugs can be replaced with good ones that truly make a difference in the disease is by studying them in clinical trials. There are now more drugs than ever being considered for the treatment of FSGS and other kidney diseases. I would encourage patients to think about exploring these opportunities. Your physician can guide you on this journey as well. Be inquisitive, as it can make a difference in your life.
Diane Jorkasky, MD, is Executive Vice President, Chief Medical Officer, and Head of Development at Complexa Inc. (Berwyn, PA), a patient-focused, science-driven, clinical stage biopharmaceutical company developing a novel class of compounds, Nitrated Fatty-Acids, for the safe and effective treatment of debilitating fibrotic and inflammatory diseases. She has over 30 years of experience in the pharmaceutical industry across all phases of clinical research and development for a broad range of drugs in multiple therapeutic areas. Diane currently serves on the Board of Directors for OSE Immunotherapeutics (Paris, France), the Scientific Advisory Boards of Sigilon (Cambridge, MA) and Alzheon (Framingham, MA) and the Strategic Advisory Board of BioMotiv. She is also a member of the faculty at the University of California at San Francisco and Uniformed Service of Health Sciences Medical Schools. She serves on the executive committee of the American Course on Drug Development and Regulatory Science. Diane has published over 100 peer-reviewed articles and teaches internationally on drug development. She received her MD from the University of Pennsylvania, where she also completed her nephrology fellowship. In 2016, she was awarded the Elizabeth Kirk Rose Woman in Medicine Award by the University of Pennsylvania. She holds board certifications in clinical pharmacology, nephrology and internal medicine. Diane obtained her BA in Chemistry from the College of Wooster, where she was honored with the Distinguished Graduate award in 2013.
Jenna Henderson, ND
New Paltz, NY
FSGS and Minimal Change patients from all over the world consult with our naturopathic clinic, Holistic Kidney. Many of them are looking for alternatives to medications or as adjunct therapy for when medications help somewhat but they are still not able to reach full remission. Naturopathic doctors are the only healthcare professionals with broad training in both botanical medicine and pharmacology. I can tell if a particular herb would work well with a patient’s current prescription medications. I don’t encourage patients to abruptly stop any medication, but over time, we may be able to reduce the need for some medications.
We recommend plant-based supplements and dietary changes to reduce kidney inflammation and proteinuria. We also address long term cardiovascular health and bone density issues for patients. The connection between Nephrotic Syndrome and low-thyroid hormones is often not talked about, even though many kidney patients report feeling chronically cold. This is something we address. We also consider chronic insomnia, which is very common with Nephrotic Syndrome. By looking at Nephrotic Syndrome from different perspectives, we are able to use natural medicine to reduce kidney stress and improve kidney function.
Dr. Jenna Henderson’s practice, Holistic Kidney, is dedicated to the unique needs of renal patients with an international clientele and patients on 6 continents. A kidney patient herself for over 25 years, she has experienced all stages of kidney disease firsthand. She is a graduate of the University of Bridgeport. Dr. Henderson has had several articles on kidney health published in Townsend Letter, Natural Medicine Journal, and NDNR. She has lectured extensively across the U.S. to naturopathic doctors, kidney patients and kidney professionals, and co-hosted the radio show Improve Your Kidney Health.
Dr. Henderson seeks to bridge the gap between mainstream nephrology and natural medicine. In her practice, she helps patients sort through often conflicting information to understand what is appropriate for their individual needs and stage of kidney function. She is often able to help patients delay the need for dialysis. For those already in kidney failure, she helps patients find optimal wellness with dialysis or a transplant. She holds a naturopathic license in the state of CT and has recently relocated to New Paltz, NY. For more information, visit www.holistic-kidney.com.