My Journey with Wegener's (GPA)

Hello! My name is KayLeigh and I was diagnosed with Wegener’s (GPA) December 2 2022. My journey started 2 years ago, actually, with major nasal congestion and drippage, which would lead to bloody mucus and coughing up phlegm. Back then doctors just kept putting me on antibiotics and allergy meds though (the meds never did anything but I got tired of seeing a doctor after so many trips). Flash forward to my BIG flare that put me in a hospital for 5 days in July of 2022. My feet were so swollen and painful I could not touch them, so standing or walking was out of the question. I left the hospital with swollen feet (I could technically walk a short distance), a positive ANCA test, and a referral to a rheumatologist for vasculitis. Once back at home I got the worst bloody nose I have ever gotten (it was pouring out of my nose 2 nights in a row; no sleep). Got a rheumatologist 3 weeks later and we started tests. I was finally put on prednisone and was able to walk again but my feet would swell up anytime I had them down for more than an hour. I started Methotrexate in September and Rituxan in November. I’ve been able to do day to day walking without swelling and my bloody nose stopped since my first Rituxan dose. I have also been able to breath through my nose a little better each day, and my cough has deceased as well. I started to get weird rashes and bumps all over my body throughout October to November but those went away by my last infusion too. 😁 Thank God for Rituxan. 🙏 The plan is to get infused every 6 months for 2 years. I’m looking forward to meeting everyone and trading stories and advice! 😁