Diagnosed with Genetic FSGS in 2020

[FSGS2020]

Hello all, I'm new here. Feeling pretty scared facing this CKD diagnosis. Watching myself slowly get worse is really hard. I was diagnosed with stage 2 CKD in 2020, which was only caught by taking a life insurance exam and it came back showing large amounts of protein in my urine. I had just had my annual physical, and thought I was completely healthy, but because they did not test my urine at the time, my labs appeared normal... Through a kidney biopsy and genetic testing later that year, it was confirmed that I have a rare case genetic FSGS. The genetic testing revealed that I have 2 APOL1 risk variants. I have been taking Losartan Potassium for high blood pressure. They put me on Farxiga 5 mg for almost a year. The side effects grew progressively worse until I ended up in the ER with stroke like symptoms, due to what they think was severe dehydration. They eventually had to take me off of the Farxiga due to not being able to tolerate the side effects. Those specific side effects immediately stopped after stopping Farxiga. I'm now 50 yrs old, at stage 3, eGFR of 54, having symptoms of frequent mild to moderate fatigue, nausea, brain fog, and some swelling in my hands and feet. My doctors keep telling me that I shouldn't be feeling any symptoms at my stage CKD, but I keep finding people online who are at a similar stage as me, and are having similar symptoms so that's irritating... I've seen 5 different specialists who are considered experts and they tell me my CKD doesn't really fit into any of the major categories. I also have degenerative disc disease in my lower back which just makes the symptoms that much worse when my back flares up. Feeling pretty frustrated as there seems to be no answers, so I just take one day at a time, eat a low protein and low sodium diet as much as possible, and try to be as positive as possible under the circumstances.

[Bet117]

FSGS2020,

Your feelings of frustration are very normal, as the words that you have and haven't heard from your doctor's are upsetting.

I can see that it's been quite a journey for you.

At this point, at least you know what you are dealing with and can discuss appropriate treatment to try to stop the progression.

Autoimmune Kidney disorders are a bit different than CKD; I have Membraneous Neuropathy, which is in the same family and a friend of mine in the UK has FSGS, it's process to get it under some control.

You are on the right track with your diet and keeping your sodium intake low; between 1200-2000mg daily, your protein intake low as well, avoiding red meats, processed foods and high sodium snacks. Drink plenty of water and keep an eye on your phosphorous intake such as dairy and potassium rich foods. No NASID pain relievers and dark colas.

Additionally, inflammation causes flare ups, so minimize sugars and foods which motivate it.

As far as the edema in feet , it can be a symptom, I'd speak to your Nephrologist about it as perhaps he/ she can address this with medication as well as an additional medications to address the protein spilling and other FSGS symptoms.

Every patient is different and responds differently to various medications. My friend was on 3 different medications in addition to BP meds before they were able to get this under control.

Keep as positive as you can, I know it's challenging. If you are unhappy with your present medical team, don't hesitate to get another opinion.

I'm happy to support at any time; just reach out.

Bet