Trying to figure it all out.

[Pete]

@robertlevigarrett

At the moment, all I can do is welcome you to the club and hope your docs get your symptoms matched to a condition and treat it.

My wife was diagnosed with autoimmune hepatitis this past July. She’s taking azathioprine and is almost off prednisone. She still has difficulty getting onto a “proper” sleep schedule and doesn’t have much energy. Hoping that improves over the next few months. She sees hepatology for a follow up tomorrow.

I’m 9 years in on GPA. Only getting an annual dose of rituximab for disease control.

It’s an interesting scenario with both of us having an incurable but treatable autoimmune disease.

[robertlevigarrett]

Hey Pete--

Thanks for the reply. I hope so too! It's been a frustrating year. Just as I was becoming "okay" with the autoimmune hepatitis, this other stuff started popping up.

It is an interesting scenario, indeed. Especially with GPA and AIH being so rare. At my first appointment with my new rheumy, he actually told me if this ends up being Wegener's that I should start playing the lottery!

FYI, I'm in Ohio, too. Greenville. It's about 45 min northwest of Dayton, near the Indiana state line.

[Pete]

Hi Robert!!

Have you considered going to Cleveland Clinic for evaluation? I’ve been going there since 2012.

[robertlevigarrett]

I have considered it. This ANCA positivity stuff is a pretty recent development.

Most of my specialists are down in Cincinnati at UC Health. I know that the Clinic is second to none in this field, but Vasculitis is supposedly a specialty of my new rheum. I’d like to follow up with him first, see what he says, then go from there.

[robertlevigarrett]

Just heard back from my rheum and he doesn’t seem to think it’s vasculitis at all. Doesn’t want to do any further testing to eliminate either.

I’m not comfortable with that considering the C-ANCA/PR3 positivity. Calling Cleveland Clinic to see about getting in for an evaluation.

Am I missing something? Am I misunderstanding the high specificity of these positive ANCA results? I know you can’t diagnose off of the results alone, but I would really like to do a few more tests before ruling it out completely.

[Pete]

At Cleveland Clinic, the top two in vasculitis are Alexandra Villa Forte MD MPH (I see her - great doc) and Carol Langford MD (Department Head).

[sshiveley]

You mentioned UC in Cincinnati, have you considered OSU in Columbus? Dr. Alexandria Meara is my rheum.

[Pete]

You mentioned UC in Cincinnati, have you considered OSU in Columbus? Dr. Alexandria Meara is my rheum.

I’m not aware of any vasculitis specialists at Cincinnati (That doesn’t mean much, btw). I was diagnosed at Ohio State, but they didn’t have as much experience with vasculitis as Cleveland Clinic. I was on cytoxan much too long. They tried me on immuran (without doing a TMPT test), and it damn near killed me. I found this forum and then Cleveland Clinic while I was recovering from that episode.