“I was incorrectly diagnosed with MCD at first.”
Was that a nephrologist? And did they do that without a kidney biopsy? That would be malpractice IMO- the only way to identify MCD is electron microscopy of a biopsy. Otherwise they are just guessing.
Prednisone doesn’t work on FSGS. A big reason why your docs should have worked harder on a correct DX. And high dose Prednisone should always be given with omeprazole or it will burn holes in your digestive system. Prednisone causes Cushing’s Syndrome, which was the weight gain you experienced. The vicious bitch temper was again Prednisone- I don’t think doctors warn enough about this effect. I had to constantly fight to suppress my temper when I was on it. And it was a daily battle. I avoided going anywhere because of the irritability and impatience Prednisone provokes.
“The crappy part was, at some point my pediatrician had noticed proteinuria, but didn’t follow up on it. Nice, huh? I was losing 30 grams daily at one point.”
Unbelievable. Except that I’ve experienced it myself. GPs fail to DX nephrotic syndrome. Proteinuria is the big flashing neon light announcing its presence and somehow they don’t see it. Spilling 30 grams is deadly. I think I was spilling 14 grams and that was bad enough. My blood albumin had dropped to just over 1 g/dl... a big stroke risk... 4 g/dl is normal. Albumin acts as an osmotic barrier keeping water in the bloodstream where it belongs. When you lose it you get the massive edema as water escapes into surrounding tissue.
High risk pools are for PECs and the hard diseases insurers don’t want to take on. Even with insurance I racked up unpleasant out of pocket expenses- biopsy copay. Copay for the all too often complete blood panels. Copay for the constant doctor visits. It got expensive in a hurry, but you don’t have a choice. Before that becomes an issue I’d check around for FSGS support groups to see what help they might have discovered. Line something up before it becomes a crisis. There’s a site I sometimes found helpful, has a lot of NS, MCD, FSGS posters. https://www.inspire.com/
The MCD diagnosis was before the biopsy. Between the realization that I had renal issues and the biopsy was only five months, though the FSGS had upwards of a decade to wreak havoc. I was initially diagnosed as having MCD because the Prednisone showed minor improvement in the proteinuria department, but not enough, and FSGS was uncommon. I was my nephrologist’s only FSGS patient for a long time, and he has a huge patient load.
I continued receiving Prednisone for awhile, coupled with cyclosporine and Protonix and a boat load of klor-con and Demadex. I needed further immune suppression, so they ceased the Prednisone and put me on the tacrolimus/cyclosporine combo. It was just an effort to delay dialysis, because there was no remission happening at that point. The kidneys were 35% scar tissue, so there wasn’t going to be any shred or normalcy.
I will keep your information in mind, though. I appreciate that you weighed in.