Hello, I'm a 33 year old female and I've been diagnosed with GPA for about 10 years now. I was researching GPA, for the millionth time, when I came across this forum and really wanted to join in. I've got a lot of years of stuff to pull from, but I'll admit that I'm not very good with remembering what happened exactly when or technical names. I was still very young when I was first diagnosed and my family has been amazing at helping me. I'm going to try and be as concise as possible, but I also know I like to ramble, and I may have already tried to write this a few times already and I'll be at this forever if I don't just submit it.

I came home from a miserable college semester with a desire to quit my current school and major. I didn't have any idea what I'd do next but thought I would take the winter to decide. Over December I began getting a lot of headaches so I went to my GP. She said it was my sinuses and was probably an infection. After a few months of seeing her every few weeks, my sinuses weren't getting any better and I had started developing aches in my joints. It got to a point where they were so stiff and sore that I couldn't get out of bed by myself and the process had me screaming in pain. So my GP began looking for new diagnoses and eventually got a positive ANCA test back. She sent me to a rheumatologist who put me on methotrexate. I should add that I was not on any steroids and he did not but me on any at that time. The next few months were rough. I hurt constantly. After several months they decided they would have to put me on prednisone as well. It took a few more months before they reached a dose that was high enough to combat my pain. But it was glorious not to hurt.

Everything seemed good after this. I had a few ups and downs as my medication was decreased to be as minimal as possible but everything seemed ok. Until about 4 years ago, I began to get protein in my urine sample, which meant my kidneys were now affected and methotrexate would no longer be an effective treatment. So we tried Cytoxan. I was on this for about a month and began to feel slightly off. Saw I was looking yellow one night and next day family agreed so I went to the ER. Was taken off Cytoxan and left with just Prednisone for a bit to let my liver recover.

The next treatment plan was to use Rituxan. The first round went fine but the next time I developed Shingles in and around my left eye a few days after my first IV. Was sent to Iowa City for a consult and they checked my Immunoglobulin levels which had all been decimated.

My doctors decided they would only use Rituxan as a last resort. After some research my Rheumatologist decided that I should be on Cyclosporine and prednisone to treat my GPA and began seeing an immunologist who put me on IV infusions for immunoglobulins. (Should mention that there are 3 kinds of immunoglobulins, all of mine are low, and only one can be replaced by current medicine)

Just came home a day ago from my most recent GPA flare-up. It wasn't a bad stay because it consisted of symptoms my doctors and I were already familiar with so we were well aware of its possibilities even when there were many others that were convinced I must have COVID because I had a sore chest and trouble breathing.

Anyway, it's strange to think about how one conditions can snowball into so many other problems both because of its symptoms and because of medication side effects. Because of GPA I now have or have had GERDS, pneumonia, depression, anxiety, hepatitis, shingles, weakened immune system, one really messed up eye, and way more knowledge of the medical system than I ever wanted by the time I was 30.