Hi all, so glad to have found this forum. My husband is in the midst of confirming Wegener’s GPA. He is in the hospital receiving the IV steroid blast.

He is 42, previously healthy (former military pilot), and we live in the Washington DC metro area.

Background story is my husband was diagnosed with rheumatoid arthritis in early April after a few weeks of shoulder pain that started migrating around to other major joints. Primary dr did lots of labs and noticed a slightly elevated RF (27) so referred to a rheumatologist who first gave meloxicam and then he moved to mtx and prednisone. However we weren’t thrilled with how that rheumatologist office was run, very difficult to get in touch between appointments (and weeks waiting for appointments) for med adjustments with side effects and rude staff. So, he switched to a different rheumatology practice about a month ago and she doubled the mtx to 20mg/wk. after 5-6 weeks total on mtx still no improvement, actually the pain and side effects were worsening with things like mouth sores, scleritis, and lots of pain especially in the legs.

then about 2 weeks ago my husband developed a cough which worsened and culminated in respiratory distress and an ER visit with a pneumonia diagnosis. The next day we saw the rheumatologist and she mentioned that she had run a test with his labs the week before that showed positive ANCA and with everything and the pneumonia, she now suspected Wegener’s and we needed to head to the hospital and be admitted to get to the bottom of it. my husband also learned in the hospital that he had been having blood in his kidneys for weeks but since it wasn’t red he didn’t know it was there.

While in the hospital we have been followed by rheumatologist, nephrologist, internist, and pulmonologist. First he had an echocardiogram and a TEE to rule out endocarditis. Then when those were negative he had a kidney biopsy yesterday and they started the steroids while we wait for the pathology. The team here is all quite confident that it is Wegener’s. My husband feels 90% better from the steroids- he can move around better than he’s been able to since this all began! We are very hopeful that with the early diagnosis and effective medications he will get into remission and back to a somewhat normal daily life. We are still in shock about the whole thing. I hope to learn from your experiences.