Newly Diagnosed: Lynda
I'm Lynda, and I'm thrilled to be joining this community. I wanted to say a big hello and express my gratitude for welcoming me here!
My journey began in April 2021. After receiving the second Moderna vaccine, things took an unexpected turn. Along with the itchy and painful arm rash that I experienced after the first dose, I also developed a frozen shoulder and a 3.8cm mass in my left lung. It's worth mentioning that I've never smoked, but I do have allergies. My pulmonologist discovered the mass by chance, as I had a CT scan of my lung back in June 2020 for a persistent cough, and everything was clear. However, during a follow-up CT scan in July 2021, the mass was detected. In addition to the mass, I was dealing with pain, insomnia, sinus problems, nosebleeds, extreme fatigue, and unexplained weight loss (about 8% of my body weight).
In July, I was referred to a neurologist for the frozen shoulder issue. The neurologist prescribed gabapentin and conducted a plethora of lab work, including numerous tubes of blood, additional CT scans and MRIs, and an unpleasant test called an EMG. Based on these tests and my symptoms, she suspected I might have GPA (Granulomatosis with Polyangiitis) and referred me to a rheumatologist. However, I had to wait for two months to get an appointment with the rheumatologist. Finally, in September, I had a chance to see him, and after discussing my symptoms and running some more lab tests, he diagnosed me with limited/non-life-threatening GPA. Although I never tested positive for ANCA (antineutrophil cytoplasmic antibodies), he believed that a lung biopsy was necessary to confirm the diagnosis definitively.
In October, I underwent surgery to remove the mass from my lung (which was quite painful, I must say!). The biopsy results confirmed that I indeed had GPA. The initial treatment plan involved methotrexate at 10mg and prednisone at 5mg for a two-month trial period. Unfortunately, it didn't yield the desired results, and I continued to experience pain and symptoms, along with some unpleasant side effects from the prednisone. The rheumatologist adjusted my medication, increasing the methotrexate to 15mg and switching the prednisone to methylprednisolone at 4mg. He also increased my lorazepam for better sleep and adjusted my gabapentin dosage. However, even these adjustments didn't bring the relief I was hoping for.
So, here I am on May 31, 2022, and in just a few hours, I'll be receiving my second infusion of Rituxan. To make a long story short, it's been over eight months, and I'm still not in remission. I'm really hoping that Rituxan will finally do the trick! The nurses at my first infusion told me it could take up to 12 weeks to start seeing any positive effects, so I'm trying my best to stay positive. But I have to admit, it feels like a long time to wait. I've been feeling miserable for over a year now, and I can't express enough how grateful I am to have found this forum and this amazing group of people. Sometimes it's tough to stay positive and strong, especially for the sake of my family, so having a place where others truly understand what we go through means the world to me.
Thanks for lending an ear and for having me here. I appreciate it!