ANCA w/o Weg???

[Woodsyartist]

Still undiagnosed
Just wondering....I have a positive ANCA (low positive but positive none the less) along with lung and sinus symptoms.
Pulm after running Breath Function feel the issues are asthmatic (I dropped function 19% when given "constricting" medication which is what qualifies his diagnosis).
His take is that since there is not coughing blood/peeing blood, that my issues are not Wegeners. I think he may have an "extreme" concept of Weg.

My question is having a positive ANCA, would I still be likely to have Wegeners??

I have had two ANCA tests done and both were consistent and low which is how my symptoms are...consistent and low. I have aches in my lungs and tire out easy, but they also found I have a low but positive ANA so could this be more skelemuscular for lupus??

Inhalers are doing very little right now.
Any information especially from you "slow and smoldering types" would be great. It has been over 9 months.

[Pete]

Positive ANCA by itself is inconclusive for GPA/WG. Have you had a CT scan of your chest? Ground glass nodules there would be a more positive indicator.

[RangersWife]

There are 3 different ANCA related vasculitis. This might help you get more information. ANCA Vasculitis (http://www.cureanca.com/)

[annekat]

I would be careful here, Woodsy. I think your doc is jumping to conclusions that you don't have Wegs based on not the right kinds of evidence. My pulmy, who has ended up treating my Wegs, did not think I had it either, because I had such a low ANCA reading, although, like you, it was positive, just barely. This was after a CT scan of my lungs showed cavitary lesions (different than ground glass nodules, Pete?), which the internist at the hospital thought could indicate Wegs. Since I'd noticed my nose had saddled, I'd gotten a nasal biopsy from my ENT which showed I did indeed have Wegs. So I showed the pulmy my nose, had him call the ENT, who'd just gotten the biopsy results, and proved him wrong. Since the ENT would not treat the Wegs, the pulmy just took over like he was in charge and prescribed me the right meds. I'm doing OK now and still have the same doc because it's hard to find a real Wegs doc around here.

i also found that inhalers did very little when my lung involvement was at its worst, and even later, when my main breathing issue was from sinus discharge getting down into my bronchial tubes and it wasn't my lungs at all.

I'm pretty sure you don't need to be coughing up or peeing blood to have Wegs. I coughed up some blood but not a lot... and I never peed blood because I didn't have kidney involvement. I think your doc is being too simplistic, or as you say, has an "extreme" concept of the disease, and you need to get a second opinion. Nine months is a long time for you to be going through this undiagnosed, if you have it. I could be considered a "smoldering" type, since I had the symptoms for 2.5 years before dx, and they came and went in intensity. This is an all-too-common scenario. Maybe you need to find a doc who is more familiar with Wegs.

[Woodsyartist]

I appreciate your responses, as it helps me get a little perspective on my symptoms. Thanks for the ANCA link RangersWife.
Anne, I thank you as well because in this post and others I am able to draw on your experiences.

I have had two CTs. The second one being clear according to several Drs. (The first one followed a week of being totally exhausted, laying in a recliner and they said it was some form of infection/pneumonia. 10 days of prednisone)

Would it make a difference if the first was done with contrast and the second was not?

This is my second Pulmonologist I am also in with a Rheumotologist who I think would like someone to just do a biopsy, as she had referred me to the ENT. Next time I see her, I think we need to lay it all out. (I had a ENT but upon sinus CT they could not find a sore area which would be good for biopsy. Though for the last month, my sinuses have been sore....seems like the lungs are a bit quieter when the sinuses are acting up.....stiffness in joints comes and goes too???? Do symptoms jump around like this?

Anne, when your sinuses were involved did you get nosebleeds or just a bunch of soreness/discharge? (No nosebleeds here)

I know I have a bunch of questions, but I so appreciate your time in helping me with this.

[drz]

I had mild symptoms for a couple years before I developed the extreme ones from involvement in lungs and kidneys but then it still took weeks for them to figure out the diagnosis. Few people with Wegs start with extreme symptoms of blood in lungs and urine, and many with Wegs never develop them at all. Most are diagnosed and treated before Wegs becomes this severe. If you want to get a correct diagnosis you need to find a better doctor with more skill and experience in this area.

[annekat]

Anne, when your sinuses were involved did you get nosebleeds or just a bunch of soreness/discharge? (No nosebleeds here)

I know I have a bunch of questions, but I so appreciate your time in helping me with this.

Hi, Woodsy,

My sinuses are still involved because the damage to them means I'll always produce excess mucus, at least according to drz and others on here, so that symptom will never completely go away. However the inflammation in that area is way less than it was, for sure, although my ears are still blocked. As for nosebleeds, I've had a few of them here and there, but never on a continual basis. Sometimes when i cough heavily, it will shake up the nasal membranes to where some blood appears. Sometimes when I get chunks out from nasal rinses, there will be some blood in them, which I guess may indicate some continuation of disease activity in that area. And I know I'm usually feeling a little less good when that happens.

I'm glad you are in with a rheumy as well as your pulmy, and perhaps she is a bit more astute about Wegs. I would assume she is correct that you need a biopsy for a dx. Perhaps now they can find a spot in your nasal area, although nasal biopsies are not always conclusive, which is probably why they are waiting. I don't know if the current condition of your lungs would warrant a biopsy there, but those are said to be more reliable indicators.

I know nothing about the "contrast" issue with CT scans, and don't know if mine were done that way.

The way you feel, the coming and going nature of your symptoms, sure sounds like smoldering Wegs. I think "jumping around" of symptoms is fairly common. I agree with drz that you need to get the best WG docs you can, to get to the bottom of this. Being in the mid-Atlantic area, I should think there would be some available that you could see or have your docs consult with. Check this link:
VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

[Alysia]

Hi Woodsy,
I never cough blood and I didn't have nodules in my lungs. but I had inflamation in my lungs which at first was diagnosed as "atypical pnemonia, resistent to antibiotics" and later as BOOP. it was cleared only by pred, without other meds. so the docs thought it might not be wg.
my nose did start to bleed about 2 months after the acute onset.
my anca was positive all that time.
2 biopsies from my nose came back false negative.
final diagnosis came only after my wg-doc made case conference about me with a lot of experts who were checking my case and then decided that it is wg.

[SpaceflightAddict]

I agree with everyone else here that ANCA is not a reliable factor in diagnosing Wegener's. I was diagnosed while being completely ANCA negative, 0 ANCAs, none, nada... it was a combination of biopsies and ruling out everything else that got me to my diagnosis. I did not have any organs other than my sinuses involved, so the doctors tried their hardest to find something else to explain what was going on, but after ruling out everything under the sun, only Wegener's was left.

[Woodsyartist]

Thank you all again. I feel the issue is the pulm is trying to rule out GPA prematurely rather than ruling out other things.

Interestingly, I asked a relative in the medical field if the CT with contrast/no contrast could lead them to think the issue cleared up. She said contrast lights up "lesions from inflammation", so in actuality nothing may be cleared up, but it may have appeared so due to the second not having contrast....

Still working away at this.

[annekat]

Thank you all again. I feel the issue is the pulm is trying to rule out GPA prematurely rather than ruling out other things.

Interestingly, I asked a relative in the medical field if the CT with contrast/no contrast could lead them to think the issue cleared up. She said contrast lights up "lesions from inflammation", so in actuality nothing may be cleared up, but it may have appeared so due to the second not having contrast....

Still working away at this. My pulmy seemed to want to think up all kinds of things that it could be besides WG. Like endocarditis, something that recreational IV drug users get. I've never ever been an IV drug user.

I only had the one CT scan of my lungs, where they saw the numerous "cavitary lesions" that could indicate WG. My pulmy now says that chest xrays will still indicate the presence of these lesions, so they don't really go away, but the inflammation surrounding them is gone. Or at least that's what I think I remember him saying. In any case, my lung issues appear to be cleared up, and he doesn't see the need for any CT scans currently. It has been awhile since I had a chest xray, too.

[windchime]

I agree with the others that the ANCA is inconclusive. Because I'm new to the forum and had read up on things here I asked my pulm doc about the test. He had not requested it for me and I wanted to know why. He also said that it is inconclusive.

The reason your inhalers may not work is because you may not have asthma. I was misdiagnosed for years with asthma and found little relief from my inhalers, both albuterol and Asmanex (steroid). Good luck with everything. Find a good Wegs doc I cant stress the importance of that enough. If you dont get the correct diagnosis you could "smolder" for years. Check with the doc about taking Mucinex to thin the mucus. Makes it a little less "chokey".

[Woodsyartist]

You have all been so helpful. I am building my case for my Drs to continue to look into GPA despite their reluctance.
My next question (which I thought about putting as a new post, but hopefully some of your who have already helped will know.
One Dr said my sed rate was not elevated and this indicates general inflammation. Does the sed rate have to be eleveated to be GPA.

I feel like I am line by line going through each of their excuses....though it is exhausting and frustrating..
Thanks for all you help in advance!!

[Pete]

Woodsy,

It seems to me that you no longer trust your doc. Might be time to look for someone else who's a bit more open-minded.

Good luck and better health!

[Woodsyartist]

I do not know if it is trust, but I definitely feel like I have to know as much as I can to ask the right questions. I've already been through a few doctor changes etc. It does not help that though I feel "yucky" my symptoms are not severe, so my appts have plenty of time in between to ruminate about all the things that have been said, seen etc.