Hello
So happy I stumbled on this forum, it’s been great hearing about peoples experience with GPA and you guys really do know a lot and some of my questions have already been answered.
Anywho, I’m a 27 year old girl from Norway and got diagnosed with GPA in May 2016, so yeah, fairly new to all this.

My story goes like this;

I’ve had sinus infections every other month for the past two years. My doctor finally succumbed and referred me to an ENT in December 2015. He found lots of polyps in my nose and set me up for surgery in March 2016.
At the beginning of 2016 I started having severe joint pains, but it would move around; one day it was my knees, the other my shoulder. I felt like a 100-year old woman – couldn’t sleep and do normal everyday stuff; I was in so much pain! I went to see a rheumatologist in April. He did some bloodwork and some tests, but couldn’t find any reasons for my pain.

Fast forward a month: Traveled to another city for a concert. During the concert my right foot swelled up badly. I couldn’t walk, so my friends carried me back to hotel. During the night it swelled up more and got discolored. Went to the emergency room the following morning and got admitted because they thought I had necrosis. Did some blood work, x-rays and ultrasounds and quickly ruled out necrosis.
My CRP and SR (? don’t know the exact term in English) were elevated and my creatinine levels where quite high. They decided to do the c-ANCA test and sent me for a chest x-ray. They saw some stuff on the x-ray and sent me do a CT-scan. It turned out to be granulomas. The c-Anca test came back positive. A biopsy of the kidney was taken and it had granulomas in it too. So there goes – officially diagnosed with GPA.

I was put on 50mg prednisolone, Bactrim, Somac, calcium and vit D supplements. As treatment goes I’ve had Solu-Modrul infusions over 3 days, 3 doses of cyclophosphamide over 6 weeks and also 2 doses with Rituximab. Luckily I’ve had no side effects of these infusions. Prednisolone on the other hand; A miracle drug, with some mad side effects: high blood pressure, heartrate through the roof, starting to see signs of Cushing’s, shaking of hands and I feel nervous all the time.

To be honest I feel kind of lonely in all this. I’ve got my family and my boyfriend supporting me, but I still have the feeling of loneliness. I’m not scared, but sad all this happened. It wasn’t my plan. Trying to stay positive, but at times is hard. I also feel like I have so many questions, but I don’t know what to ask. I just want to go back living my life – going to work, working out, hang out with my friends and do normal stuff.