March is National Kidney Month, a time dedicated to raising awareness about kidney disease, early intervention, and the importance of personalized care. For people living with nephrotic syndrome associated with focal segmental glomerulosclerosis (FSGS), and for the clinicians who treat them, this month is also an opportunity to acknowledge a difficult reality: standard therapies may not be enough or tolerated.
For some patients, the most challenging moment comes not at diagnosis, but later, when symptoms persist, worsen, or return after a kidney transplant. In these cases, timely decisions may be critical to protecting kidney function and long-term outcomes.
A Quick Refresher: FSGS and Nephrotic Syndrome
FSGS is a condition that damages the kidney’s filtering units (glomeruli), often leading
to nephrotic syndrome, which may include:
– High levels of protein in the urine (proteinuria)
– Low serum albumin
– Swelling in the legs, abdomen, or around the eyes
– Fatigue and reduced daily functioning
While many patients initially respond to corticosteroids and/or calcineurin inhibitors, a meaningful subset experience steroid resistance, intolerance, or incomplete disease control. For these individuals, ongoing proteinuria may be associated with continued kidney injury.
When FSGS Returns After Transplant: Why Urgency Matters
Kidney transplantation can feel like a new beginning—but for some patients with primary FSGS, recurrence can occur days or weeks after surgery.
Posttransplant recurrence is more than a laboratory finding. Rising proteinuria, falling albumin, and increasing creatinine may indicate active injury to the transplanted kidney, and prolonged exposure to uncontrolled disease activity may be associated
with an increased risk of graft injury.
Both adult and pediatric experiences show that early recurrence is often aggressive, requiring close monitoring and, in select cases, consideration of additional management approaches.
Reference: Raina R, Jothi S, Haffner D, et al. Post-transplant recurrence of focal segmental glomerular
sclerosis: consensus statements. Kidney Int. 2024;105(3):450-463. doi:10.1016/j.kint.2023.10.017
Why Standard Therapy May Not Be Enough
Standard treatment approaches are foundational, but they have limits:
– Some patients are steroid resistant
– Others experience significant side effects or intolerance
– In posttransplant recurrence, immunosuppression alone may not adequately control proteinuria
When disease activity continues despite these measures, clinicians may look for additional options that can be introduced during a high risk window, particularly when kidney function is still preserved.
Considering Additional Options in Select Patients
For certain adult and pediatric patients with nephrotic syndrome associated with primary FSGS, Liposorber LA15, approved as a Humanitarian Use Device (HUD), may be an option when:
– Standard treatments (including corticosteroids and/or calcineurin inhibitors) are unsuccessful or not well tolerated, and the patient’s GFR is ≥ 60 mL/min/1.73 m²
or
– The patient is postrenal transplantation
In limited clinical settings, Liposorber has been used as an adjunctive treatment
option, particularly in posttransplant recurrence where early control of proteinuria has
been used during periods of heightened clinical concern following transplantation.
A Structured, Time Limited Treatment Approach
In both adult and pediatric settings, Liposorber therapy is often implemented as a finite,
structured course, rather than an indefinite treatment:
– Total of 12 treatment sessions over 9 weeks:
o Twice a week for the first 3 weeks
o Followed by once a week for the next 6 weeks
This defined approach aligns with the clinical urgency seen in posttransplant recurrence and allows care teams to assess response while continuing standard medical therapy.
Reference: Trachtman R, Sran SS, Trachtman H. Recurrent focal segmental glomerulosclerosis after
kidney transplantation. Pediatr Nephrol. 2015;30(10):1793-1802.doi:10.1007/s00467-015-3062-1
Special Considerations in Pediatric FSGS
In children, recurrent FSGS is often described as biologically driven and time sensitive, with circulating factors believed to contribute directly to kidney injury. Because early remission has been associated with better long term graft outcomes, prompt action is frequently emphasized.
For families, recurrence can disrupt school, routines, and emotional wellbeing—making clear communication and shared decision-making especially important.
Questions Patients and Families May Want to Ask
National Kidney Month is a good time for reflection and conversation. Patients and caregivers may consider asking their care team:
– What does my (or my child’s) current proteinuria level mean?
– How do we define success with standard therapy?
– What are the next steps if proteinuria doesn’t improve?
– Are there additional options appropriate for posttransplant recurrence?
– How does timing affect long term kidney outcomes?
Learn More Through Real World Patient Profiles
Understanding how others have navigated similar challenges can be helpful. The following patient profile brochures provide educational examples of adult and pediatric experiences with posttransplant FSGS recurrence and treatment decision making:
Download the FSGS Patient Profiles:
- Adult FSGS Patient Profile: When FSGS Returns After Transplant
- Pediatric FSGS Patient Profile: A Time Sensitive Post Transplant Challenge
These resources are intended to support informed discussions between patients, families, and healthcare providers.
Important Safety Information
Liposorber LA-15 is a Humanitarian Use Device. Talk to a healthcare professional to determine whether this option is appropriate based on individual clinical circumstances.
For complete indications and safety information, visit liposorber.com/liposorber- safety-info.