Hello all! I'm Arlene and I just joined up so I wanted to say hi and thank you for letting me part of this community!

My story starts in April 2021. It seems the 2nd Moderna vaccine triggered not only the itchy, painful 7-day arm rash that the 1st dose provided but a few other problems including frozen shoulder and a 3.8cm mass in my left lung. I've never smoked but have allergies so the only way my pulmonologist found the mass was by chance. I had a CT of my lung in June 2020 because of a cough and all was clear but my follow-up July 2021 CT showed the mass. I should note that my main issues were pain, insomnia, sinus problems/nosebleeds, extreme fatigue and unexplained weight loss (about 8% of my body weight).

My neurologist who I was sent to in July for the frozen shoulder problem put me on gabapentin and after no less than 45 tubes of blood for a host of labwork, more CTs/MRIs, and a horrible test called an EMG test she suspected I had GPA and referred me to a rheumatologist (2 month wait). I finally got an appointment with him in September and he went over all my symptoms and redid some labs. I developed secondary Sjogren's syndrome and secondary inflammatory arthritis (I already had Raynaud's, thyroid issues, etc.) so those were new developments. And though I never tested positive for ANCA he said "tissue is the issue", meaning I had to get a lung biopsy of the mass for the most accurate diagnosis to see if I in fact had what he too suspected was GPA.

In October I had the mass removed (OUCH!) and it was confirmed I had limited/non-life-threatening GPA. So my first plan he had me on was the methotrexate 10mg + prednisone 5mg. That 2 month trial didn't work out well for me as I still had all the pain/symptoms plus the new horrible ones that the prednisone gave me! He increased my methotrexate to 15 mg and changed prednisone to methylprednisolone 4mg. He also increased my lorazepam to 1-2mg each night because my sleep was awful and increased my gabapentin 300mg to 6 times per day. Again that did not work out.

So finally here I am on 5/31/22 and in a few hours I am having my 2nd Rituxan infusion! Long story short, I'm still not in remission after 8+ months and am hoping the Rituxan finally does it! I was told by the nurses 2 weeks ago at my 1st infusion that it takes up to 12 weeks to start having any positive effects from it so while I'm doing my best to be positive that is a long time! I've been miserable for over one year now and all I can say is how grateful I am to have found this forum/group! It's hard sometimes keeping a positive, strong appearance (mostly for my family's sake) so it is nice that there is a place here where others understand all the stuff we go through!
Anyway thanks for listening and, again, thanks for having me!