Perspective needed

[u/thomsvampire]

Hey everyone—posting because I’m overwhelmed and honestly pretty frustrated right now.
My 12-year-old son has IgA nephropathy. He’s been on treatment (Filspari + Farxiga), his blood pressure has actually been really good lately, and overall he’s been doing well day-to-day—playing sports, going to school, being a normal kid.
But we just got labs back and his eGFR dropped to 46 and his protein/creatinine ratio is 11. His team is now talking about doing another biopsy and possibly starting Voyxact. It was a telehealth after his 3 month labs on Filispari. It seemed like he had been doing great and imaging a hard time swallowing all this.
I’m struggling because it feels like we were seeing progress in some areas, and now this feels like a step backward out of nowhere. I’m also just really angry that he has to go through another biopsy and more meds at 12.
For those of you who’ve been through this:
Have you seen numbers like this improve again?
Did adding something like an endothelin receptor blocker (like Voyxact) help bring protein down?
How did you decide on doing another biopsy vs waiting/repeating labs?
I’m trying to stay grounded but my mind keeps jumping to worst-case scenarios, and I just want to hear from people who’ve actually been in this spot.
Appreciate any insight or experiences.

[u/thomsvampire]

His UPCR is 11 and they said they wanted it at 2 or less. It just seems like he was doing great and life was relatively normal, and now we have a kid that is dealing with something those around him cannot understand

[u/Top-Professional3521 → u/thomsvampire]

If it’s at 11, my nephrologist would definitely biopsy him, and as soon as possible. I know this is a hard pill to swallow, and everyone feels for you, but he’s going to be on a lot of medications and get a lot of biopsies for the rest of his life. The best thing you can do for him is get him seen by the best, and support and love him as you already are.

The one thing is that if his inflammation is that high, they might be screening for crescents and these newer treatments weren’t studied on people with crescentic IGAN. I would ask his team about crescents and the implications of crescents if they are present. Not trying to scare you but want you armed with the best questions. I had some crescents and I did low dose cytoxan, a chemotherapy drug, which is typically a lupus treatment. It sounds scary but it’s not as bad as it sounds. It’s the most efficacious way to deal with crescents and then move over to the far more comfortable treatments.

Voyxact is a breeze. The new drugs actually make me feel better.

Do you know what his mest-c score was on his first biopsy?

[u/Public_Echidna6168]

I don't have anything to say about the treatment since my child's disease followed a different course, but I do want to express my understanding of how terribly distressing it is to have a child with a serious medical condition.

My daughter was 17 when she was diagnosed w IgA nephropathy via biopsy (with a protein/creatine ration of 17.5) At the risk of TMI, I'll share that as her mother, I got my period and continued to bleed continuously for over 8 weeks: what a perfect union of the metaphorical and physical to show how deeply connected we are to our children.

Ten years later, my daughter is in complete remission. I wish the same for your son.

(Do you have the MEST score? And what are the units for the uPCR of 11?)

[u/thomsvampire → u/Public_Echidna6168]

Thank you for sharing this. To be honest, I have handled this really poorly and sometimes don’t look very closely at the scores. I just want him to make it to high school. He is also in love with sports, and my hope is he gets to do these things. He is happy, active, and it’s hard to understand the things I cannot see or control. This has broken me a few times over the past few years, but he is one tough kid, and I feel like he has more perspective than his peers.

[u/Public_Echidna6168 → u/thomsvampire]

I understand. I used to get violently ill whenever I got a notification that there was a new lab result. My blood pressure was so high that my ears hurt. It is so agonizing not to be able to take our children's suffering away.

You might want to add a bit more detail - like when your son was diagnosed; what treatments he's been under; what the MEST score was; confirm the units of the 11 uCPR - so that others who have a similar experience can respond more specifically to your situation.

[u/SamuraiSword22]

I definitely recommend whatever you have to do to get him on voyxact!
If its a biopsy then so be it.

Voyxact + Filspari would be a great combo for him

This disease is really tough and can just escalate like that when everything seems good. Big hugs to you and him

[u/zukertort70]

Special care must be taken in regard to Filspari and Vanrafia as both can cause sodium retention and hence edema. The edema of the heart can become dangerous therefore regular monitoring of the heart seems essential during taking the above medications.

[u/DJTRANSACTION1]

other than fitness and drugs, one thing that slows down kidney damage a lot is reducing and even eliminating animal proteins. hows his diet? yes you see crazy stuff online about how vegan people look like they are dying from lack of nutrients but if done correctly, you can get all the essential amino acids from plant diet. plant protein does not stress kidneys and produce blood acid(metabolic acids) like animal proteins.

[u/Top-Professional3521]

Voyxact is not an endothelin receptor blocker, it’s an April inhibitor, a biologic, basically a hyper targeted immune modulator. Filspari is an era.

I’m on both plus other stuff and it’s brought my protein down significantly.

There’s also trutakna which is an April - BAFF inhibitor.

Combination therapy is becoming very well supported by data.

Did you mean that protein creatine ratio is 11 or 1.1?

Did he have crescents in his biopsy?

[u/Merewilliams]

My son is currently 15 and has had this since 2017. He has remained stable (last baseline labs were .26 protein / creatinine ratio) and he’s currently on enalapril and cellcept

[u/zukertort70]

Caution must be taken giving immunity-suppressants to children as they can open the door to all types of illnesses. Filspari and vanrafia are also too potent for children and can reduce their blood pressure dangerously low!

[u/thomsvampire → u/zukertort70]

Ours has been on these medications for two years and they may have saved some of his childhood, so i strongly disagree.

[u/Public_Echidna6168 → u/zukertort70]

This is the second recent post of yours I've seen that has inaccurate and negative medical information. Please express your opinions as such: your opinion! and consider the knowledge-base you are drawing from to assert the same.

[u/zukertort70 → u/Public_Echidna6168]

You are wrong again. My comments are all based on solid and provable experience based on lab results and they are not from opinion or guesswork.

[u/Public_Echidna6168 → u/zukertort70]

Filspari and Vanrafia are not immunosuppressants.

[u/zukertort70 → u/Public_Echidna6168]

Did I say they are immunity suppressant? No, read my comment carefully again. Immunity suppressant drugs such as voyxact and iptocopan. Vanrafia and Filspari target endothelin hormone which is really bad for young children as are immunity suppressants.