Possible GPA

My sister has confirmed GPA, and I have been dealing with similar symptoms for years. I do not have a diagnosis yet though. This is partly because I got cancer, and didn’t flare much during treatment, and also because I was diagnosed with skin psoriasis (as was my maternal aunt) and I’d been thinking my symptoms were entirely related to probable psoriatic arthritis.

Now I’m flaring again, and it’s getting worse each day. My fatigue, brain fog and skin issues are notable. The lesions look identical to what my sister has, and she’s in an active flare now too.

Anyway, it’s looking like I may possibly have both GPA and PsA, but the rheumatologist I’m currently seeing (she was the first available after a nearly three year gap after my last rheumatology visit) does not seem the least bit interested in coordinating my case or solving this puzzle. I have been offered no treatment and told to see my primary care for worsening symptoms.

My ANA titres were high, but I was ANCA negative (so was my sister when she was first diagnosed).

I’m going to see a PA at my primary care physician’s office tomorrow (again earliest available) to request a biopsy of my lesions. I have an SI MRI scheduled for early August. (Mostly looking for PsA signs.) I’ll request a follow up with my old rheumatologist (also my sister’s doc) as soon as the MRI is done.

I guess just wanted to reach out for company and/or advice while I navigate the system and wait. I hate that there are only “bad news” outcomes here—either we discover I have a named autoimmune condition, and I have to live with that, or we don’t get answers, and relief is delayed or never given…