Im new and Ineed some information on p panca postive and MPO positive

[Chris G]

Maria - I'm not sure what you mean by "Panca C". I am not C-ANCA positive if that's what you mean. I am P-ANCA positive (MPO), like your daughter.

It could be that your daughter has episcleritis, which is inflammtaion of the thin layer which covers the sclera. It's not usually painful, but can be equally red and angry looking.

Here's a little section from one of the studies I mentioned:
The sensitivity of c-ANCA in active Wegener’s
granulomatosis is 91% and has a specificity of 99%3. The
patients with Wegener’s granulomatosis, who are p-
ANCA positive, have fewer organ involvements than
those with c-ANCA; the combination of respiratory tract
and renal involvement occurs less frequently in the p-
ANCA group. p-ANCA (MPO-) is found in fewer than 5%
of patients with Wegener’s granulomatosis.

As this study mentions, P-ANCA positive WG patients are less common, and may not have involvement of the lungs and kidneys. I do not have lung or kidney involvement. While it's certainly not a guarantee, your daughter may not either.

In 07/08 I had repeated sinus problems, an ear that would not unplug, with diminished hearing in that ear, croupy cough which lasted for 3 months, severe fatigue, daily headaches, and I kept losing my voice for no reason. The eye symptoms were episcleritis, scleritis, keratitis, eyelid swelling, and corneal infiltrates. I saw no less than 6 different doctors, and the only one that suspected autoimmune diseases, was the opthalmologist who was unsuccessfully trying to treat my eyes. He was the one who ordered an ANCA test on me. It was positive for P-ANCA, and the MPO was 98. I was still not diagnosed at this time, as very shortly after that, the disease went quiet on its own. It returned last year, starting with fatigue, and a plugged ear again. My symptoms this time were slightly different. But I knew I needed to get to a rheumatologist. This time I do not have eye involvement, but I have more nose involvement - crusting, bleeding, burning, etc, and the ear inflammation is also much worse this time.

I was put on methotrexate and prednisone, along with other standard suppliments. While the mtx has helped, unfortunately it's not going to put me into remission. I will be changing to rituxan in the next week or 2.

WG is treatable and manageable!! I hope that you are able to find a specialist quickly. It will speed the process of diagnosis/treatment, and also ease your mind immensely.

[maria garcia]

Did you ever have a chest exray and sinus xray ?

[Chris G]

Yes, however x-rays by nature, don't usually show much detail. In my case there wasn't much to see anyhow. You may need CT's to show better detail of both areas.

I've had both x-rays and CT's of the lungs and the sinuses. Nothing much to see in either place. Lung CT showed one tiny lung nodule, which may or may not be related to WG. Sinus CT showed mild mucosal thickening, but no damage.

Did you say that your daughter had some nose bleeding? A scope of the nose is a good diagnostic test.

[maria garcia]

Chris with no diagnostic test coming out positive for Wegener's and C- Anca was negative are they sure your diagnosis is Wegeners Granuloma? Wow, how confusing if the xrays are not a good detail. This disease is becoming so complex to understand. I want to make sure if they putter her on heavy meds there sure of the diagnosis. I mean yes she is p anca positive. But all in our family have suffered from allergies how scarry they come out with a false positive or vise versa.

[maria garcia]

Why is MTX not going to put you in to remisssion?

[Sangye]

Mtx can induce remission only if the disease activity is mild. Otherwise they need to use a stronger drug like cytoxan or rituximab.