Hi everybody! Let’s just jump straight to the beginning.

Late august 2019 (just before our Spring) I started getting a large rash from the neck down all over my torso and upper limbs. I initially thought it was some sort of allergic reaction to some plants I’d been cutting back. A week later it was worse, so my GP referred me to a dermatologist, who performed a punch biopsy and found a possible allergic reaction. Treatment was over the counter antihistamines, which actually pushed the rash back.

About three days later I notice stiffness and pain in some joints (left shoulder, left elbow, neck, both knees, left ankle). The pain got progressively worse until I could barely move some days. I went back to my GP and we went through some possibilities, including maybe Ross River fever or some form of STD. She eventually referred me to a rheumatologist near my residence who performed some blood tests and physical exams. The day after the blood test he was rushing me into hospital to do further tests for something called “ANCA-associated Vasculitis.” I laughed and said I’d never heard of that, his response was basically “It’s a good thing I have, because hardly anybody else knows of it.” As you probably all know on this forum, the Anti-neutrophil test is not something which is regularly preformed, and doesn’t come up in a standard blood work.

anyway, I spent a couple of weeks in hospital, I was shoved straight on to 50mg of Panafcort daily, which screwed my blood sugar to hell, so they also plugged me on to diabetes medication to control that. Meanwhile I had kidney and lung biopsies, contrast CT scans. My left eye became inflamed and itchy to the point I could barely keep it open. A couple of times I felt like I could barely move and my appetite dropped off to zero. I’ve been hospitalised a few times, but this was pretty confusing and overwhelming because I’d never heard of GPA.

Biopsies all came back clear, they had been especially worried about my kidneys, but they were clear as well. I was release back to home, had a med plan worked out, and booked for Rituximab infusions in the following weeks.

A year later, four specialists, multiple clinic visits, my granuloma numbers have gone from 600 to 10.7. I have another follow-up next week with my rheumatologist. I’m moving fairly freely now, no rash, no other complications so far. Fingers crossed, but I’m hoping it’s in remission for now. The worst part is being on 2000mg mycophenolate daily and then having a f***ing COVID pandemic hit three months later. I’m sure you can all relate there.

Thanks for indulging my sob story, I’ll keep updates coming. Stay safe everyone and thanks.