Minimal Change Disease (MCD) Minimal Change Disease (MCD) is a disorder affecting the filtering units of the kidney (glomeruli) that can lead to symptoms associated with Nephrotic Syndrome. It is one of the most common causes of Nephrotic Syndrome in children worldwide and can also be diagnosed in adults. Overview and symptomsMinimal Change Disease (MCD) is a disorder affecting the filtering units of the kidney (glomeruli) that can lead to symptoms associated with Nephrotic Syndrome. It is one of the most common causes of Nephrotic Syndrome in children worldwide and can also be diagnosed in adults. Normally, the kidneys clean or filter the blood, discarding natural waste products from the body into the urine and returning vital elements such as proteins and red blood cells back into the blood stream. When the glomeruli are damaged, however, protein sometimes “slips through” the filters and escapes into the urine. Almost 85% of children with Nephrotic Syndrome symptoms have MCD, so the term “Nephrotic Syndrome” is often used interchangeably with MCD. Because MCD does not cause permanent damage to the filters of the kidneys, the prognosis is generally good. Some symptoms of NS include: Swelling in parts of the body, most noticeable around the eyes, hands, feet, and abdomen (edema) Weight gain due to extra fluid building up in the body High blood pressure (hypertension) High fat levels in the blood (high cholesterol) Protein in the urine, which can be foamy (proteinuria) Low levels of protein in the blood (hypoalbuminemia) High levels of creatinine in the blood due to your kidneys not filtering properly. Find out more about your lab values here. How is MCD diagnosed?The only way to definitively diagnose Minimal Change Disease is through a kidney biopsy. A diagnosis of MCD is given when a kidney biopsy reveals little or no change to the glomeruli or the surrounding kidney tissue, and no scarring is seen within the kidney. However, most children do not receive biopsies early in their diagnosis. Since most children with Nephrotic Syndrome symptoms have MCD, MCD is a presumed diagnosis during the typical first course of treatment with corticosteroids. Other diagnostic tools may include: Urinalysis: determines the amount of protein in the urine Blood work: determines levels of creatinine, albumin, cholesterol, and many other factors examined to rule out other causes Glomerular filtration rate (GFR): Your GFR estimates your kidney function by calculating blood creatinine levels with urine protein levels. Click here for a GFR calculator. Ultrasound: sometimes performed to get a closer look at the kidneys Who gets MCD?Children of all ages and even adults can get MCD, but it mostly affects young children under the age of 5. MCD is the most common cause of Nephrotic Syndrome in children, associated with 80 to 90% of cases. It makes up only 10 to 15% of Nephrotic Syndrome cases in adults. Males are twice as likely to develop MCD as females. What causes MCD?MCD is idiopathic, meaning it arises without a known cause, so researchers are actively trying to learn more. Research studies indicate that MCD could be related to a decreased number of glomeruli within an individual’s nephrons. A low glomeruli number is also associated with a low birth weight. Without an appropriate number of glomeruli, the volume of existing glomeruli must expand to meet the body’s blood filtration needs. How is MCD treated?There are currently no FDA-approved medicines to treat MCD. The standard first-line (initially prescribed) treatment for MCD is prednisone, a corticosteroid aimed at decreasing proteinuria. The short-term goal of treatment is to stop protein spillage completely (known as remission) or lower the amount of protein lost in the urine as much as possible. The less protein lost in the urine, the better the patient will do. The long-term goals of treatment include preventing relapses of protein in the urine and preventing the deterioration of kidney function. Your nephrologist may also recommend: Medications that suppress your immune system Diuretics and a low-salt diet to help control edema A medication that blocks a hormone system called the renin angiotensin system (ACE inhibitor or ARB) to control blood pressure or lower urine protein Anticoagulants to prevent blood clots Statins to lower the cholesterol level Maintaining a healthy diet and regulating protein and fluid intake according to your nephrologist's recommendations. A healthy diet consists of low-sodium foods with an emphasis on fruits and vegetables that are low in saturated fat and cholesterol. Exercising Not smoking Taking vitamins Treatment-resistant MCD in adultsInitial treatment for primary MCD is steroid (prednisone) therapy. The standard steroid regimen of 8-16 weeks typically leads to complete remission in over 80% of adults with MCD. These patients are considered steroid-responsive. Patients that do not achieve complete remission during the initial steroid regimen are considered steroid-resistant, also known as treatment-resistant. Research suggests that only 5-10% of adults with MCD are steroid-resistant. Some experts believe steroid-resistant MCD is actually undiagnosed FSGS, or early-stage FSGS. Steroid-resistant MCD in adults typically requires a repeat biopsy to ensure adequate diagnosis and the addition of other medications, such as cyclosporine or tacrolimus. These additional medications are added on with or without low-dose steroids. If a mycophenolate-based medication (CellCept or MMF) is used, low-dose steroids should be used until the patient achieves complete remission. Only then can the low-dose steroid be tapered. Research suggests that about 30% of adults with steroid-responsive MCD will experience frequent relapses (4 or more relapses in 12 months) and end up becoming steroid-dependent. Patients are considered steroid-dependent if they have relapses during or within two weeks of completing a steroid regimen. As with all diagnoses, supportive treatment measures other than steroids and immunosuppressive medications are commonly used. Most commonly, doctors will also prescribe or give orders for: Low-sodium diet Blood pressure medication Lipid-lowering medication Blood-thinning medication Medications to reduce fluid retention, swelling, or edema It’s important to remember that the goal of therapy for MCD patients is to significantly reduce the amount of protein in the urine, causing remission of the Nephrotic Syndrome. Close monitoring by a kidney doctor is required to reduce the risk of potentially fatal complications. Living with MCD1. Following a low-sodium diet may help your kidneys’ function and improve your MCD symptoms. 2. Finding a nephrologist that specializes in MCD that you trust is very important to your long-term health. 3. Learn about your disease, treatment options, and clinical trials in order to better advocate for yourself. 4. NephCure Kidney International can help you connect with other patients and find support to manage your disease. Prognosis of MCDThe prognosis of MCD is generally good. Studies show that 93% of children with MCD will achieve complete remission within eight weeks of steroid treatment. For adult patients, 51 to 76% will achieve remission within eight weeks, and 76 to 96% will achieve remission within 16 weeks. (1) If MCD does not recur for three years, there is a good chance that it will not return. The future of MCDThere are currently no FDA-approved medicine treatments for MCD — but right now, the future looks more promising than ever before. There are at least 20 potential new medicines for Nephrotic Syndrome diseases in various phases of clinical trials. These clinical trials are absolutely essential in making new treatments possible, and they need patient involvement to succeed. That's why NephCure launched KidneyHealthGateway.com, an online platform that connects Nephrotic Syndrome patients with clinical trials in order to advance research and eventually find a cure for FSGS and other protein-spilling kidney diseases. Access breakthrough clinical trials, expert care, and one-on-one patient support all in one place — visit KidneyHealthGateway.com to find the clinical trial right for you. Interested in learning more about MCD? Dr. Suneel Udani covers care options, clinical trials, and other research associated with MCD and Focal Segmental Glomerulosclerosis (FSGS) in this webinar from the 2021 NephCure Patient Summit. Download this information as a PDF here. References 1. Saha, T.C., & Singh, H. (2006). Minimal Change Disease: A Review. Southern Medical Journal. 2. UpToDate. (December 3, 2021). https://www.uptodate.com/contents/minimal-change-disease-treatment-in-adults 3. Glasscock, R. (2013). https://www.kidney-international.org/article/S0085-2538(15)55757-8/pdf