Are My Concerns Warranted (Sorry Very Long Post)

[Debbie C]

I too am like Jana,my anca test kept coming back neg. so my first reumy didn't believe I had Wegeners until my pulmonary dr. had a right middle lobectomy done so they could get enough to biopsy...they tried with just a needle a couple of times but that didn't work.Has yr wife ever had a ct scan of her lungs since she's coughing up blood ? I sure hope u find the answers you need to get her on the right track....the poor thing has been thru and still going thru hell. Good luck with yr appts.

[annekat]

Me, too, on the negative ANCA. But I had a saddle nose, which seemed sort of obvious, so my ENT biopsied my septum and I was dxed that way. Previous to that, I'd had a CT scan which showed the lung involvement (the saddle nose was not noticed until later). Plus I was obviously just very sick and weak in general, had joint pains and swollen eyes, neuropathy, and such classic symptoms as those. A nasal biopsy would be easier than a lung biopsy if there is sinus involvement.

[Sangye]

**Update**

The doctor yesterday said he is going to biopsy my wife's throat, because of her history. He did not mention Wegener's at all. I am going to my Rheumatologist today, though, and I am going to mention to her about my concerns for my wife (since my wife has already seen her). If the biopsy is negative, then I think we will ask the Rheumatologist or the ENT Surgeon to order an ANCA test for her, just to be on the safe side. Her biopsy is scheduled for a week from Thursday; I will keep everyone posted.

I'm glad they're doing a biopsy. If it's Wegs a throat biopsy might not be conclusive, or may be false (-) due to the sample size. Take it one step at a time, though. This is a good start

[worried hubby]

I would ask for the ANCA test first, just for this reason.

Al

Al, I did talk to our Rheumatologist, and she was very concerned! She said exactly what you said, and sent me home with orders for the ANCA and other blood work. She said the surgeon, absolutely, needed the results before the biopsy. My wife is starting to be concerned as well, and went for the blood work yesterday. Also, since she works for a doctor, she had the results sent straight to her office, so we will not have to wait to find out. I wonder how long an ANCA usually takes?

She is in total misery right now with her back and came home last night complaining that she has terrible mouth sores all in her mouth and around her gums. She said she couldn't even stand to eat, they hurt so bad. If Wegener's is anything at all like the Ankylosing Spondylitis that I have, and has "flares," then, if she does have it, I would think she is in a major flare. I've read a lot about the ANCA and it says that it is sometimes positive and sometimes not, depending on disease activity at the time of the test. That said, I would think that if hers is ever going to be positive it would be now!

I also know from reading this wonderful support group, that many, like annekat and Debra C, have never tested positive for ANCA. This actually doesn't surprise me in the least. My Ankylosing Spondylitis has a genetic marker called HLA-B27 that is present in upwards of 90% of the people with AS. Guess what... I am negative!

I hope you all don't mind me keeping you up to date with our saga. And I really did not intend for this to become a long thread of updates in the "Introductions" forum. That being the case, if the administration wants to move this thread to the general forum I would completely understand.

John

[Sangye]

Hmm, I don't see why the need for an ANCA before the biopsy. The cellular changes associated with Wegs are evident. They will list the possible diagnoses on the report. Also, biopsy samples can always be re-examined at a later date since the lab keeps them for quite some time. When I first presented to a pulmonologist, he wanted to do a biopsy via bronchoscopy right away, as opposed to waiting for the ANCA and other lab tests to come back. I've never heard of a biopsy being delayed for an ANCA.

An ANCA usually takes about 4 days to get back.

PS John, no need to worry about long threads or where you put your updates, etc... We aren't a very picky group!

[worried hubby]

Hmm, I don't see why the need for an ANCA before the biopsy. The cellular changes associated with Wegs are evident. They will list the possible diagnoses on the report. Also, biopsy samples can always be re-examined at a later date since the lab keeps them for quite some time. When I first presented to a pulmonologist, he wanted to do a biopsy via bronchoscopy right away, as opposed to waiting for the ANCA and other lab tests to come back. I've never heard of a biopsy being delayed for an ANCA.

I think the big thing for our Rheumatologist was that if the test should be positive, she wants to make sure that both the Surgeon and Pathologist will be considering Wegener's. It seems that often times, they don't even consider such a rare disease. For instance, she specifically asked me about the pathology reports with my wife's aforementioned Parotid surgery, like she wondered herself what I did about them being conclusive. I know that for me, it took years and years and five separate Rheumatologists (before I found her) to get a real AS diagnosis and to get on the biologics that have literally changed my life. By the way, she wants me to stay off the Humira for awhile since I am doing so well. She said that if I have a flare, I can go back on it. I concurred.

As far as putting off my wife's biopsy. We are not putting anything off for the test. It is not until a week from today, so I'm pretty sure the ANCA will be back by then.

John

[drz]

I had 12 tubes of blood drawn at Mayo for regular labs at 10 am and got results including a negative ANCA from Dr. Specks a few hours later. Some places like my local clinic have to send it away and then it takes longer.

[Dirty Don]

My experience with Mayo is the same...a morning of appts then meet the docs in early afternoon and all the info is right there in front of them for analysis. Won't ever leave them! Hmmm, that was double sided, wasn't it!!! LOL

[worried hubby]

Well, it came back today... negative. She was also negative for ANA again, and her creatinine and bun was normal. The only thing terribly high was her CRP. Her white count is low, though, so we are pretty much back to square one looking for answers. CRP was all that was ever elevated for me with my AS as well, so who knows. She is in really bad shape right now, and I just want her better. I asked her again today about her sinus surgery from 7 years ago and she said that the doctor said he had never seen anything like what he got out of her. The pathology was inconclusive and he said it had the consistency of "peanut butter." I'll let you know when we have the results of her throat biopsy. Based on the negative ANCA, though, it looks less like Wegener's. Lets just hope again that it is not cancer.

[Al]

Hmm, I don't see why the need for an ANCA before the biopsy. The cellular changes associated with Wegs are evident. They will list the possible diagnoses on the report. Also, biopsy samples can always be re-examined at a later date since the lab keeps them for quite some time. When I first presented to a pulmonologist, he wanted to do a biopsy via bronchoscopy right away, as opposed to waiting for the ANCA and other lab tests to come back. I've never heard of a biopsy being delayed for an ANCA.

An ANCA usually takes about 4 days to get back.

PS John, no need to worry about long threads or where you put your updates, etc... We aren't a very picky group!

Sangye, I have to take exception to a few points, so I will respond directly here.

I suggested the ANCA test first for just the reason that Hubby provides: Doctors are human. Call us humans the story-telling ape. We all invent narratives. In a scientific context, these are critical in coming up with testable hypothesis: You come up with 20 questions to ask of nature. If you have a logical narrative, nature will provide consistent answers every time you ask the questions. However, this does not mean that you have asked the right questions--and nature is under no obligation to tell you what you forgot, or never knew, to ask.

In the specialty system, diagnosticians naturally are sensitized to consider a narrative that fits his or her training and experience. I call this the "street lamp syndrome", after the old joke about the guy who is looking for his lost car keys under the street lamp. "Why are you looking here," asked his buddy. "You lost your keys over there." "Yeah," said the guy, "but the light is so much better under the street lamp." The point of this is that if Hubby's wife's rheumy is pre-disposed to consider vasculitis, that affects the entire narrative, and therefore which streetlight to look under. Otherwise, as we have seen, alas, too many times, the correct diagnosis may never be found.

You want an example of having the ANCA test first? Consider my case: As a nephrologist, Drac could have, and usually would have, asked for an elective kidney biopsy. This could have taken a couple of weeks or more--and, as it turned out, would not have been very conclusive in itself, as I had no clear granulomatous lesions. But when I was diagnosed, Drac had already suspected vasculitis and had ordered the ANCA test. The results allowed him to order an immediate biopsy. The pathologist knew of the ANCA test (and had already gotten the histological story), so was ready to read the biopsy with that in mind. The whole process from test to treatment took just a few days--a fact that I still marvel at. Indeed, a few more hours and I would have lost at least my kidneys, if not my lungs--perhaps my life. I was a very lucky man. This kind of fortune tends to make a guy a true believer in the process.

Now, looking a few posts ahead, Hubby's wife may or may not have WG (probably not, but despite the negative ANCA, the jury is still out). However, I would lay long odds on the answer being something autoimmune (not SLE, though), perhaps even another form of vascultis. Of course it is important to get the biopsy, but I think the rheumy is correct in considering all possibilities at this point.

Al