Robert Sanchez, co-founder of Kidney Forward, discovered that he had Focal segmental glomerulosclerosis (FSGS) after he started feeling off. When he received his diagnosis, he wasn’t sure what he had. Sanchez ended up on dialysis and subsequently received two kidney transplants. While there is no cure for FSGS, slowing down the progression of the disease may be possible with proper treatment and lifestyle changes. Work with your HCP to find the right balance.
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Sanchez’s Symptoms Seemed to Come Out of the Blue
“I would wake up with these huge migraines. I was peeing bubbles. But because I’m a man, I thought, maybe I’m working too much,” he said. His then-girlfriend told him he didn’t look right; he was swollen. “I went to my boy’s house, and I showed him my legs; my calves were just big. He said, We’ve got to the hospital now.” Sanchez said. “We went to Mount Sinai, and there I was diagnosed with FSGS. I didn’t know what it was.”
He was sent to another hospital, where he didn’t get the information or the care he needed. “During the first visit, I was there for a minute, and the doctor said, Yeah, this is what’s going to happen. Boom, boom, take this, take this medication, and I’ll call you next week,” Sanchez recalled. “And I left feeling like, Wait a minute. What was happening to me?”
The APOL1 genotype is present in 75% of Black patients with FSGS. According to Scientific Reports, “Approximately 20% of patients may eventually progress to end-stage renal disease (ESRD) due to its complex etiology, unclear pathogenesis, and insensitivity to glucocorticoid therapy.”
Through his organization, Sanchez aims to bring better access and equity to the kidney transplant process.
What Are the Treatment Options for FSGS?
The Mayo Clinic reports that there are a few approaches you and your nephrologist may choose to treat your FSGS.
Medications may include:
- An angiotensin-converting enzyme (ACE) inhibitor or an angiotensin II receptor blocker (ARB). These can lower blood pressure and reduce protein in the urine.
- Medicines to lower cholesterol levels. People with FSGS often have high cholesterol.
- Medicines to help the body get rid of salt and water, which are known as diuretics. These can improve blood pressure and swelling.
- Medicines to lower the body’s immune response. For primary FSGS, these medicines may stop the immune system from damaging the kidneys. These medicines include corticosteroids. They can have serious side effects, so they’re used with caution.
Lifestyle changes you need to keep in mind:
- Don’t use medicines that can damage your kidneys. These include some pain relievers such as nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDS you can get without a prescription include ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve).
- Eat a healthy diet. To protect your kidneys and lower your blood pressure, limit salt and protein.
- Don’t smoke. If you need help quitting, talk with a member of your healthcare team.
- Stay at a healthy weight. Lose weight if you’re overweight.
- Be active on most days. Being active is good for your health. Ask your healthcare team what types of exercise and how much exercise you can do.
According to LowerProteinuria.com, there are also some gaps in the treatment landscape.
- Treatments such as corticosteroids, immunosuppressants, SGLT2is, ACEis, and ARBs often yield limited response, with few patients achieving complete remission of proteinuria (<0.3 g/d) and most remaining at high risk of kidney failure progression.
- Corticosteroids and immunosuppressants are associated with a high side effect burden that significantly impacts the quality of life for patients.
Why Treating Genetic FSGS May Be Different
An article in the journal Kidney Research and Clinical Practice states that “Genetic FSGS may be less responsive to immunosuppressive therapy, and clinicians should consider discontinuing immunosuppression to protect patients from the potential side effects of such therapy if no clinical benefit is demonstrated after receiving positive gene test results.”
The good news is that genetic testing that identifies specific biomarkers may help in developing more targeted therapies in the future. “In recent years, the spread of next-generation sequencing, updates in biological techniques, and improvements in treatment have changed our understanding of FSGS.”
FSGS Clinical Trials
There are promising therapies on the horizon for FSGS; however, none have received FDA approval. If you are interested in exploring clinical trials, NephCure has revamped its Clinical Trial page and added a featured tool called Am I a Match? It is designed specifically so that those with RKD can easily find trials. Check out the American Kidney Fund and the National Kidney Foundation for additional resources..
