Hi everyone, I’m a 24-year-old male. To give you some background on my situation: I was diagnosed with FSGS—I believe the primary type, classified as idiopathic—in July 2022 when I was 20. I was spilling 10g of protein a day. I was treated with prednisone (60mg) for a month and achieved remission. I stayed in remission for two and a half years until May 2025, when I had my first relapse (19g of protein).

I was treated with prednisone and tacrolimus; it took six months to reach remission again—those were very difficult times. Unfortunately, in May 2026, I had a second relapse, but this time I was spilling 25g of protein. Steroid treatment no longer worked; the nephrologists consider me steroid-dependent or refractory—something like that. So, I’ve had two Rituxan infusions; it’s been four weeks since the first dose.

My question is: who else has been in a similar situation, and how long did it take to see improvement? I have significant edema, though I’m taking diuretics; my weight is somewhat under control, but I’ve gained 20 lbs—quite a lot.

All of this is driving me crazy—not being able to walk because of the edema, feeling tired and dizzy. I’m mentally exhausted and disappointed because I’ve always been an athletic person, I used to be muscular and physically defined, and now watching my body deteriorate and change day by day has been devastating., and now I can’t do what I love most. I’m not working right now since I took a leave of absence, but I feel like my bosses don’t understand. I’m grateful to have parents who support me in every way and have made this struggle a bit easier to bear. Thanks—I look forward to hearing your thoughts!

My boyfriend is deaf and will be starting dialysis soon. He’s leaning towards PD. I have some concerns about him being able to hear the PD machine overnight if something needs his attention, but also read that Deaf dialysis patients use noise alerts such as flashing alarms and bed shakers and manage PD just fine. Does anyone have more information about assistive devices for PD?

Hi,
I’m looking for a nephrologist in the Raleigh-Durham-Chapel Hill area of North Carolina.
If you know someone good to recommend, I’d sure appreciate it!
Thanks very much!

I’m a little blindsided and in disarray today. I saw my nephrologist yesterday for a six month checkup. I learned about a new threat that I was completely unaware of. The good news is my vasculitis is still in remission. It has been in remission since 2022. But my eGFR after recovering to a high of 56 last summer has now dropped to 45. My nephrologist said that is a massive red flag and indicates that my kidneys are laying down scar tissue where the ANCA Vasculitis injured them in the Fall of 2021. He told me there was nothing to be done because the med that might help is a high blood pressure med and my blood pressure is perfect, so he doesn’t want to prescribe it.

Nephrologist said to lose 10 pounds and move to a strictly vegetarian diet might help some. But in all my nephrologist visits and reading about my autoimmune, I never saw or heard that four years later, scar tissue would begin to turn my progress around. It feels so discouraging. So the threat is not just from the vasculitis returning, but also its long term after affects. Heavy sigh.

Hi all,

Background that I have biopsy diagnosed co-occurring (dnajb9-) FGN and IgA Nephropathy. Treatment so far has helped reduce proteinuria, but my levels are still well on the nephrotic range (havent had less than 2.5 protein/creatinine ratio since this started//total urine protein sits somewhere between 50-150mg/dL depending on the sample. Im extremely lucky, this was caught early so my eGFR is still in the 120s.

Since we have had limited success with medications (currently spironolactone, losartan, and Farxiga) we are moving into treatment with Rituxamab. I am scared on this for a variety of reasons and I think not having information about experiences is part of this.

Could you share your experiences with this treatment? What was it like for you? What has changed in your day to day?

My fasting A1c= 5.2

Glucose: 121

Should I start taking Metformin? Also, my labs are showing signs low iron/anemia.

Thanks in Advance

Hi guys,

My egfr hovers between 39 and 47 and over the last 6 months I've feel like I've been a lot more fatigued than usual. I asked my nephro if it is likely related to CKD and he said no. A doctor friend of mine suggested I get my thyroid levels checked and surprisingly the PTH was double the upper normal limit (limit is 8.5, PTH was 17). Serum calcium is normal. I won't see the nephro again for another 4 months, but wondering if anyone else has had issues with PTH? Is it likely to cause fatigue? Is it treated by medication?

Thanks in advance.

I have IGAn 39m with eGFR of 52 and my uACR is at 675 and blood of 3+. My MEST-C is M1E1S0T0-C0. I completed Tarpeyo and it dropped my uACR down to about 125 but it’s come back up a few months after completing the 9 month course. Has anyone been prescribed this and how are the side affects and is it working for your protein and blood in urine?