Tracking Symptoms and Triggers of FSGS

Being diagnosed with a rare kidney condition like focal segmental glomerulosclerosis (FSGS) can really knock you for a loop. To make matters worse, FSGS can be confusing. It’s not a disease exactly. It’s a pattern of scarring that impacts your glomerular system — the filters that remove waste from your blood. It can happen for many different reasons, and everybody experiences FSGS a bit differently.

Nephrologist Corey Cavanaugh, DO, explains how symptom tracking can help your provider understand the particulars of your FSGS and treat the condition appropriately.

Different FSGS types mean different triggers

Knowing the difference between primary, secondary and familial FSGS is crucial. It determines the kind of treatment you need — and the role symptom tracking will play in that process.

“While they’re all called FSGS, the three types are often miles apart in terms of how we approach them,” Dr. Cavanaugh explains. “That’s why it’s vital that you find a nephrologist who understands the difference — and has experience working with the one you’ve got.”

A genetic mutation (change) that affects specific cells in your kidneys causes familial FSGS. Symptom tracking can help you monitor your kidney function and determine what’s most likely to make your condition worse.

Primary FSGS, which is typically an autoimmune condition, hits hard, fast and usually has an obvious trigger.

“When we look back in hindsight, it’s often caused by infections, a medication or even, sometimes, a vaccine,” Dr. Cavanaugh says. “They can trigger primary FSGS because they activate your immune system.”

Dr. Cavanaugh notes that aggressive immunotherapy can often get you into remission. Symptom tracking helps make sure you stay there. And if you don’t, it can shed light on why.

Secondary FSGS means it’s being caused by something else. And that cause can be hard to pinpoint, in part because the condition can progress slowly.

Symptom tracking is helpful for all types of FSGS, but it’s especially helpful if you have secondary FSGS.

“There are many, many things that can cause secondary FSGS,” Dr. Cavanaugh adds. “Identifying the ‘why’ is the thing we have to figure out in order to treat you properly.”

Secondary FSGS triggers can run the gamut. Many health conditions can cause it, from sickle cell anemia and diabetes to viral infections like HIV and COVID. You may also develop secondary FSGS in response to something you’re taking, like prescription medications, over-the-counter drugs, herbal supplements and narcotic substances, like heroin.

Symptom tracking helps your providers home in on your secondary FSGS triggers and suggest appropriate treatment.

What symptoms to track

Tracking symptoms is an imperfect — but important — way to help your healthcare providers figure out what’s triggering your FSGS. But that doesn’t mean you need to maintain daily records or jump every time you notice a slight change.

“I don’t want anyone worrying all the time,” Dr. Cavanaugh emphasizes. “On the other hand, nephrologists don’t have unlimited, highly precise tools to determine your triggers, so your insights are valuable for us as we try to figure out what caused your condition.”

Consider monitoring the following. Also note any changes to your medications or behavior (more on this later).

Swelling

Your kidneys are responsible for filtering fluid and waste out of your body, which makes tracking swelling and fluid retention a useful way to assess your kidney function at home. But measuring swelling can be a bit complicated.

“It can be challenging if you’ve always had swelling, but it’s worse now,” Dr. Cavanaugh recognizes. “How do you adjust for your usual swelling? What is a lot? What is a little? Those things are always a bit subjective. These are questions to ask in a conversation with your clinician.”

You can get a sense of how much fluid your body’s holding onto by:

• Weighing yourself at regular intervals
• Tracking your pain levels (especially in your lower extremities)
• Noting if the skin on any of your extremities is shiny or has pits when you touch it

When does your doctor need to get involved? Dr. Cavanaugh advocates using the “rule of twos.”

“If you gain around two pounds on two consecutive days in a row, and you notice that the weight gain’s coming with either higher blood pressure or noticeable swelling, take an extra dose of the diuretic you’re prescribed — if you’re on one — and contact your nephrologist,” he advises.

Being proactive is important because once that fluid builds up, it can be tough to remove.

“It’s better to be on the safe side and tell us earlier. That way, you can head problems off at the pass,” Dr. Cavanaugh explains. “The rule of twos isn’t perfect, but at least it’s something to fall back on.”

Urinary symptoms

There are a few different ways that noticing changes to your pee can help assess your kidney function.

• Track how often (and how much) you pee. If you’re passing more pee than you usually do, or you’re suddenly peeing more often, it could be a sign that you’re retaining fluid.
• Use a dipstick to check for protein once a month. If there’s protein leaking into your pee (proteinuria), it means you have nephrotic syndrome. “Dipsticks are a little trick we use for people who don’t always have a little protein in their urine, to make sure it hasn’t changed,” Dr. Cavanaugh shares. This is helpful if your FSGS is in remission.
• Noting changes to your pee’s color and consistency. If your pee develops a pink, red or brown hue, it likely contains blood (hematuria). That’s often a sign of a kidney infection, stones or another condition that’s worth a call to your nephrologist. Foamy, frothy urine can be a sign that your kidneys are damaged and leaking protein.

Blood pressure

Keeping an eye on your blood pressure is another way to gauge whether your FSGS is affecting your kidney function.

“The more fluid you have in your body, the more fluid is in your blood vessels,” Dr. Cavanaugh says. “And the higher your blood volume, the higher your blood pressure.”

Just like weight, blood pressure can fluctuate for many reasons, many of which have nothing to do with your kidney function. Keeping track of both makes it a bit easier to make connections.

“If you notice your blood pressure and weight are creeping up and you haven’t changed your medicines recently, that could reflect excess fluid accumulation that you can’t always see,” he adds.

Contact emergency services (911) immediately for blood pressure readings over 180/120, regardless of your other symptoms.

Behavior and lifestyle changes

Symptom tracking is always useful for keeping tabs on your renal health, but you need to track it alongside behavior and lifestyle changes if you’re trying to identify FSGS triggers. Examples of behavior changes to note include:

• Diet: If you’re considering a big change — like starting a weight loss journey or going vegan — tell your doctor ahead of time. But if your eating habits change for a short time, like during the holidays, keep track of what’s changing and how you’re feeling.
• Physical activity: Are you going to be laid up for a few weeks due to an injury? Are you training for a 5k? Write it down.
• Sleep: Like every other part of your body, your kidneys need rest. But sleep disorders and kidney disease can go together like peanut butter and jelly. Be aware of any changes in your sleep duration or quality.
• Stress: Life happens. And when it happens in a way that’s traumatic or stressful, it can increase inflammation. So, if you’re really in the thick of it, be sure to note it.
• Smoking: Smoking causes direct damage to your kidneys. If you smoke, be sure to record any change to how much, how often or how you’re doing it (vaping, for example).

There are some changes you need to share with your nephrologist immediately. Always alert them if:

• You were hospitalized, even if it wasn’t kidney-related
• You plan to start, stop or switch prescription medications
• You’re considering using nonprescription products*
• There’s been a change in your substance use behavior, which can affect your medications (including sobriety)

*Over-the-counter pain medications, laxatives, cold medicine, antacids and more can damage your kidneys. So can herbal supplements, certain vitamins and even, in rare cases, products like fillers that are used in cosmetic procedures.

Trust your gut

Don’t underestimate your powers of observation and intuition either.

“Most people are going to notice a change on their body before their provider does,” Dr. Cavanaugh acknowledges. “If you say, ‘This isn’t quite right,” it doesn’t have to look bad to me. If it’s not right for you, it’s not right.”

If you bring concerns to your provider, they should run tests to see if the changes you’re experiencing are reflected in your kidney function.

“Based on that follow-up, we can either put your mind at ease and say, ‘I know something’s changing, but it doesn’t seem like your kidneys are being affected,’ or say, ‘You’re right, we need to make a change,’” he continues.

Final thoughts

Healthcare providers only diagnose FSGS in about 7 out of 1 million people per year. With numbers like that and your renal health on the line, it’s important to have honest conversations with your nephrologist.

And that honesty has to go both ways.

“It’s a rare condition. So, it’s crucial that your nephrologist understands what type of FSGS you’re dealing with, and the differences between the three types,” Dr. Cavanaugh urges. “That’s a really big deal.”

If they don’t have that expertise, have them connect you with a provider who does.

It’s just as important to be open with your provider about your health. You may have to discuss sensitive subjects, like substance use or sexual function. Dr. Cavanaugh stresses that your nephrologist isn’t there to judge you.

“You may be surprised what information is important,” he says. “Sometimes, things you think are relatively benign, like the supplements you take, can have negative consequences, while other things are fine. Simply put, when you give us the best information, we can give you the best answer.”

Working as a team is the best way to get the information you need to understand — and, hopefully, improve — your renal health.