Treatment Trifecta
My nephrologist said I’m likely the single most treated IGAN patient when it comes to the new therapies, and wondering if there’s anyone else with the same or a similar cocktail.
I have been on Voyxact and Filspari since January and February respectively. I started the fabhalta bridge program - which is 12 months - today.
I was diagnosed EGFR 38 with a MEST C Score of M1 E1 S1 T2 C1, did three months of cytoxan, and had a second biopsy of M0 E0 S1 T2 C0. Scar tissue = 80%
My protein went down to .5g but tacked back up to 1.5g. In that time I was supposed to start fabhalta but insurance denied and my neph wanted Voyxact more.
Voyxact and Filspari have brought my protein down to .296g. But the renal pathologist at SPARK gave me 5 years till I need a transplant and my neph said it’s not unreasonable, and that Iptacopan may be the most beneficial addition to further slow my progressive scarring. Something about inhibiting a certain receptor that’s being studied in a clinical setting but my kidneys wouldn’t survive without the other drugs.
I went to SPARK (IGA Nephropathy Foundation Patient Summit) and was surprised by how many US patients are on 1 or fewer of the new therapies.
The research really points to combination therapy: at least April/Baff inhibitor plus ERA, but the complement pathway could be the thing that ultimately knocks us out even with proteinuria beneath .3g.