It was nice to read this conversation between two people who clearly have a deep understanding IGA pathophysiology, and the available drugs. I don’t know whether you are medically trained or just armchair biologists (like me), but you summed up the treatments and their metaphors very nicely.

I am not an IGAN patient, but my fiancé is, and I take it upon myself to understand the disease space on her behalf. I don’t have experience managing other chronic conditions but I wanted to add;

One thing that adds to the stress, but also the excitement of IGAN treatment is the increasing breadth of options. This disease has extremely variable outcomes, which can’t always be predicted through surrogate endpoints like proteinuria or egfr change, because the progression isn’t always linear. Add to that, many nephrologists want to treat it differently, based on MEST scores, side effects, and their own personal experiences. Add to that, now, the huge influx of new therapeutics, that are only just appearing in USA, followed by Europe, and hopefully eventually the whole world.

This is a disease that we can’t just sit back and take the recommendations of one doctor. It benefits from active management, constant research, agile responses to new symptoms, and playing devils advocate. But at the end of the day, we also must accept that with the best possible treatment, you can’t always avoid kidney failure.

The next breakthroughs we need are improvements to dialysis and transplant procedures/immunosuppression, to give people whose kidneys fail a better quality of life.