u/liltofuuu

Hi everyone! I have posted on here a few times now — I’ve been on Tarpeyo and Filspari for about 4 months and not much improvement at all in labwork. Had a flare about a month ago and unfortunately my proteinuria (1.8->2.2->now 3.5) and eGFR (118 before Filspari->99->now 78) worsened and have not seen much bounce back after 3 weeks.

Will probably doing a repeat biopsy soon to determine next steps. Doctor is suggesting either switching to CellCept + methylprednisolone if it’s just active/stubborn inflammation, or IV cyclophosphamide if it’s become crescentic. Wondering if anyone has experience on CellCept and how long they were on it — thanks.

Have also asked about Voyxact but am not sure if it would be strong enough.

Hi all,

I recently experienced a flare this weekend due to a stomach bug. My lab numbers are the worst they've ever been, and my nephrologist is pushing for a repeat biopsy as soon as possible to determine whether the disease has become more active and potentially crescentic.

For context:

• I was diagnosed in October 2025, M0E0S0T0C0 by biopsy. My uACR then hovered between 100-200 mg/g and eGFR around 125 which was acceptable to monitor without medication.
• In February 2026, I got sick with a cold and my proteinuria jumped to 800 mg/g. Didn't see improvement after the cold went away, so my doctor started me on Tarpeyo and Filspari in early April. eGFR still holding fine at 118.
• Just prior to my recent weekend illness, my uACR was tested to be 1252 mg/g and eGFR 99 -- an indicator that the medications weren't quite working yet.
• Now, as my recent symptomatic sickness is starting to clear, my uACR is highest it's ever been at 2094 mg/g. Moreover, my eGFR is at 83 on Saturday and then 70 on Wednesday -- the lowest it's ever been.

The nephrologist is concerned that I have active disease going on and is worried about scarring in the form of crescents. I guess I always thought crescentic disease was something they'd catch in the original biopsy as the "type" of IgAN I had. Is it a possibility that my disease has evolved in that direction and is now rapidly progressing? Or have you all experienced something similar after a flare with bad labwork that improves later on? I was really relieved about my MESTC score back in October but it seems like a quick turnaround to have another biopsy in less than a year.

He is also suggesting IV cyclophosphamide and oral glucocorticoids (probably prednisone) which seems intense to me.

If anyone has advice on a similar situation or treatment plan, I would love to hear it. Definitely a little scared :(

Question above! I was feeling sick all weekend but no respiratory symptoms — just nausea, fatigue, achiness, stomach cramps so thinking it was a stomach bug. It’s been about 3.5 days since I started seeing gross hematuria as well, so that checks out on the kidney side. Wondering when the visible hematuria will subside and whether my proteinuria / eGFR will bounce back.

It’s been about a month and a half since I started Tarpeyo and I wanted to share how my experience has been so far, since I was so worried about side effects in the beginning!

In the first week and a half, there were immediate changes in my body.

• I did have some trouble sleeping at night while adjusting to the medication, but that resolved relatively quickly.
• I was nauseated in the morning after taking the pills and before eating, although that might’ve just been me adjusting to taking so many pills in the morning.
• I felt way thirstier than usual and couldn’t figure out whether it was dry mouth or my body actually needing more water while adjusting to the medicine.

These are all resolved by now. I also experienced really strong fatigue toward 7-8pm for about three weeks. My guess is that my body was still adjusting to the cortisol stuff and the level of Tarpeyo would get lower and lower throughout the day. Now that I have a more consistent amount circulating in my body, my energy levels are pretty normal.

About a month and a half in now, here’s what else I’ve noticed. I have seen a little weight gain, but no change in appetite/the amount I eat. My weight now fluctuates pretty often — probably due to water retention. For example, I did go on vacation and unfortunately had some pretty salty meals ; I came home 10 pounds heavier but quickly dropped 8 of those after a few days. When I eat on the saltier side, I do see swelling in my calves the next day. I think I have a little bit of moonface unfortunately alongside that swelling, but not super noticeable yet.

Other bodily symptoms — certain parts of my body are more tender to the touch. Specifically, the area around my neck, under my chin, and lymph nodes gets pretty sore randomly. My legs and arms bruise much more easily than before. I have a little bit of acne where I didn’t before (on my cheeks) but it’s not terrible.

Just wanted to share! These are all really minor and I’m so grateful for this medication as an alternative to prednisone. I will be doing updated labs soon and will share results! Home test strips are still showing same level of proteinuria (usually around 2+) but the Tarpeyo reps always say not to get my hopes dashed since results don’t show until 3-6 months.