More confused than ever

[debhaz22]

So last week my Rheumatologist looked at my labs he ran 2 months ago and said I have Wegener's (I guess based on the Positive c-ANCA, and symptoms...). So he ran some more blood work. I just got the results and the nurse is telling me he said I don't have WG because the PR3 was Negative. I asked if I could have him call me when he has a chance so I can ask him some questions about why the high Pos c-ANCA and why we weren't going to do anything further. His nurse told me "No, he doesn't talk to patients on the phone. You can ask me and I'll ask him and get back to you". Is this typical???

[Dirty Don]

The doc's response isn't out of the ordinary....their time is precious AND expensive. On the other hand (oh, it's on my coffee cup...sorry!), you need a more proactive doc/team built around you. You do have some very good WG clinics and docs near you if you're willing to travel a bit. Think about it...

[annekat]

What are your symptoms? You did mention a pulmonologist, perhaps he has his own opinion of whether you might have WG. I agree about looking into the specialists within range of where you live, but if it takes time to get an appt., you might want to keep pursuing any local help you can get. If you have nasal involvement, you could see an ENT. I've learned on here, I think, that a tissue biopsy from an affected area is the best way to diagnose WG. Or you could see a different rheumy for a second opinion. I understand your feeling confused. After 5 years of probable WG and 2.5 years of treatment, I am still confused, too!

[pberggren1]

I would still try and get to see Falk at UNC.

[annekat]

Phil knows what he is talking about!

[drz]

I would still try and get to see Falk at UNC.

I think they also list another Weg expert at his place so you might have better luck getting in to see one of them.

[NikkiNicole]

I had a very high PR3, high ESR, high CRP, symptoms, etc. We did a biopsy and my rheumatologist said it wasn't Wegener's at first. But, the symptoms and everything else was there. I didn't have any kidney involvement so the rheumy was OK leaving it as is and waiting to see what happened. I wasn't comfortable and got a second opinion from another rheumy.
She called the pathologist who confirmed necrotizing granulomas in the biopsy. It was the piece of the puzzle that was needed. BUT ... the biopsy had been done in conjunction with a cancer diagnosis so the pathologist never mentioned the granuloma, thinking it was just infection.
So ..... the diagnosis was finally confirmed with all pieces of the puzzle. It only took them a year and a half.
Keep pushing .........

[Debbie C]

I'm not sure about this but I thought the anca and pr3 tests weren't sure fire ways to diagnos this. I now when I was first tested....for months my bloodwork came back neg for anca and pr3. So my reumy here didn't even think I had wegs until my pulmy did a lung biopsy and thats how they found out it was wg. My reumy at C.C. wrote my dr. here a letter stating that wegeners doesn't always show up positive for those tests. He doesn't even check them in my monthly bloodwork. GET ANOTHER DR.

[annekat]

I'm so in the dark about some of this stuff that I don't even know what PR3 is. Tried to look it up but too much technical language. My brain turns to jello. Maybe someone can define it in simple terms.

So, I don't know what my PR3 was but I know my c-ANCA was barely positive, so low that my pulmy said he didn't think I had WG. He didn't know, and I had to tell him what I'd learned on this forum, that is isn't a surefire indicator. So what did he think all those lesions in my lungs were? As it turned out, I developed a saddle nose right about that time, and knew what that meant from reading this forum. When my ENT saw that, he was more than willing to do a septum biopsy. Of course, it came back positive, and the rest is history. But it has been noted on here that septum biopsies are not always conclusive. The more active involvement in the tissue, the better. And lung biopsies are said to be more conclusive one way or the other. That is, if one has lung symptoms in the first place.

So, if I hadn't been reading this forum even before I was dx'ed, and all this time, I might not even have been dx'ed! Except that the saddle nose would have clued someone in eventually. But even that, I had to point out to people.

[Alysia]

Hi Debhaz
welcome to the forum. I hope that it turns out that you don't have WG but meantime you can get here a lot of important info. this place is life saving.
as was written above the tests are not conclusive. it is strange that c-anca came positive and pr3 not. from what I know, they correlate.
I think you should find yourself another doc, who will be available. or insist with that doc on getting answers and talking to him when you need to.
good luck and update us.