Confused with pANCA test and doc recommendations

[lovetoswim]

Hi Alaskatom, I am not going back to that ENT with his, as you so aptly called it, "bundling" offer. No way am I going through any surgery I don't need. So my immunologist said my pANCA was high, but C-ANCA is normal and MPO is normal. He recommended a lung biopsy, as he felt the results pointed to WG. What is the ESR and CRP readings you were high in? I don't know what that means. My chest CT scan showed some scarring and patchy infiltrates--perhaps from the pneumonia I had in December. I don't know who to see first.

[annekat]

Yes, what they could see in my chest CT scan was numerous small, scattered "cavitary lesions" that they surmised were the result of WG. The phenomenon may be different in other patients, with bigger lesions or nodules, containing granulomas, and they may be localized in certain areas instead of being scattered. The scan happened while under observation overnight at a hospital, so this was an overseeing doc who referred me back to my regular ones. My ANCA was not very high, but that's not unusual. I was coughing up a little blood, had the nasal and ear issues, headaches, eye redness, and trouble breathing. Within a couple days of getting home I noticed my saddle nose and had already been on the forum and knew what it was, plus my parotid gland was swollen. My pulmy was on vacation and I went right into my ENT office and got the two easy biopsies. The parotid may not have been infected but more full of WG activity, plus the doc wanted to rule out cancer, since it felt like a lump. Once the official dx came in I was treated by my pulmy as he felt competent to put me on the right meds and oversee my blood work and breathing function. I still saw my ENT to monitor my sinuses and ears. I should have had a rheumatologist but wasn't confident I could find one in my area with much WG experience. I did well on the treatment but think the pulmy had me on Cytoxan for longer than necessary. I've now been on methotrexate for a few years. My pulmy just retired, so I have found a rheumy in my community who seems to have some WG experience and seems nice, but I've only seen him for the initial consultation. I could go to Seattle for more experienced specialists, but I'm not​ much for traveling and also might have to wait awhile for an appointment. In your case, maybe you could find someone competent by continuing to ask around, and by contacting the Vasculitis Foundation for advice, or call Dr. Merkel's office regularly for possible cancellations​. And I've heard the same thing about getting new appointments with pulmy's and rheumies even here. I got a cancellation appt with the rheumy and haven't even tried to get a new pulmy appt yet, as my lungs aren't bad now. Maybe there is a local online group of Weggies in your area, perhaps on Facebook, who could help you with all this, too. And there are general vasculitis and Wegener's groups on FB, too, whom I or others can refer you to, where you can throw out a few questions. If you send me a private message I can hook you up with a couple. I wish you luck.

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[Alias]

Interesting, I also had parotid swelling, but it was not biopsied and subsided with standard treatment for GPA, i.e. prednisone and an immune suppressing drug.

Lovetoswim, the ESR and CRP tests are for non-specific inflammation markers. Positive results can mean many different things, but can point towards GPA in combination with other findings.

My initial symptoms were hearing loss, apparent ear infection, and nasal/sinus issues. I also had some vertigo issues for a while before I was diagnosed. My chest CT was clear, so there was no discussion of lung biopsy.

Generally, a rheumatologist would be the most appropriate specialist to address GPA issues, but an ENT or an internist could also direct you through at least the diagnostic stage.

[lovetoswim]

Thanks, Alaskatom. I've had hearing loss since the 1980's and it has worsened. I've also had a few violent vertigo attacks, and labrynthitis that lasted 8 months - it was horrible. Besides the parotid gland infection, I've had 2 eye infections, and what I thought was chronic sinusitis. What is so scary is that I've been to at least 4 ENT's and was sent home with dx of "hair follicles" for the swollen lymph nodes, or recommendation to have sinus surgery. After a year of this, no one has ever thought it could be anything more than chronic sinus issues.

I hope I can find a semi-competent rheumy at least until I can see Merkel.

[lovetoswim]

Hi, Annekat, I will pm you. Thanks so much for all your help. There is a nodule on my chest scan, as well as some "patchy infiltrates" whatever that is.
How is your "quality of life" on methotrexate?

[drz]

You may want to get an appointment with Dr Peter Merkel in Rheumatology at University of Pennsylvania. He's among the best in the world at treating Vasculitis.

Typical therapies for Vasculitis often include high dose prednisone along with an immunosuppressant.

The good news is that with proper care, you can have a near normal lifestyle. I'm 70, and I swim 1,000 yards twice a week.

Good luck!!

See Merkel ASAP!!!

[lovetoswim]

Seeing any doc in U of Penn is daunting. the next appointment is in July for a pulmonary doctor. With credentials like Merkel's, I can't imagine I could get in anytime soon until I have a definite dx, which i can only get from a lung biopsy.

[John S]

I contacted the Cleveland Clinic and saw Dr. Villa-Forte, a rheumatologist, within a week. She told me that she only works with Wegener's patients and always tries keeps her schedule open so that she can see new patients.

[lovetoswim]

My cousin passed along my "story" to her U of Penn gastro guy. he doesn't udnerstand why the doc who ran the blood work and dx'd me with possible Wegs didn't give me a lung doctor referral for the biopsy. I've hit brick walls at every turn. OTOH, this gastro doc claims pANCA can be high when there's infection going on. Is that possible? I have been quite ill over the last 12-18 months, but other than a lot of mucus, I've been working out like a stallion every day and feel really good. Could I still have Wegs?

[annekat]

See Merkel ASAP!!!

Try calling Merkel's office on a regular basis, like once a week, to ask about possible cancellations. This has worked for other forum members trying to see various doctors ASAP. Meanwhile, pursue other avenues if you can.

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