I thought I spotted it in your handle. You have my empathy. The Minimal Change Disease variant of NS that I know all too well gets treated with 60mg Prednisone when it goes active, but Tacrolimus rang a bell. I guarantee you that high doses of prednisone can make you absolutely crazy so you’re not missing out on any fun. Not sure about FSGS but MCD is like an invisible disease, meaning that almost no one knows that you are really, really ill, so you don’t even get any sympathy out of the ingrates. Shoot, I even had to tell my primary care physician to check my kidney function last time, they don’t see NS often enough to spot it.
I was incorrectly diagnosed with MCD at first. I was treated with Prednisone on and off for years, and I didn’t tolerate it well. Bluntly put, not only did I become [more of] a vicious b!tch, I had unbearable heartburn that turned into ulcers, I gained back some of the water weight I’d lost, and was puking up a storm. The insomnia compounded all of those issues.
I had been in the ER five times with my eyes swollen shut and almost immediately sent home with benadryl, but was finally referred to a nephrologist by my Mom’s doctor, who ordinarily didn’t see anyone under 21. 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. I lost a bunch of my hair and had to be put on diuretics to take all of the water off. It turned out to be 100# of it; more than a cubic foot. I’m a bit over 5’2”, so that was hard on me. I’m lucky that my nephrologist is excellent, and he functioned as my primary for a long time.
I am aware that insurance will be costly. I’m concerned about what happens if my inability to work persists and I can’t acquire it through an employer. If protection (i.e.: Coverage cannot be refused on the basis of a PEC) is removed, how likely is it that I will be denied coverage even in a high-risk pool? I assume that it has happened. I’m currently covered on Medicare because I was on dialysis, but I’d like to go back to work eventually. If I do, I lose Medicare and have to wait however long before any employer-provided insurance kicks in (30-90 days) and that’s if insurance is provided. Even that short time is not affordable for me, and my husband’s insurance may as well not exist with a $10k deductible and covering 1% of doctor’s appointments and 50% of ER cost. I have no clue what medicinal coverage is, because my husband doesn’t take any. (I kid you not. It’s terrible.)
I can’t even start with regarding whether or not my doctors are in-plan. I’ve been seeing them for almost 20 years, and I’d rather not switch, especially when they save me money by allowing me to diagnose my own infections and other recurring conditions.