P-anca positive

[Chris G]

While reading through some older posts, I noticed that several people asked about P-ANCA WG. I am P-ANCA positive as well. With the P-ANCA presentation being unusual, I thought I'd start a thread to see how many of us their are, and whether our symptoms vary at all from traditional WG symptoms. I would also like to know whether your doctors insisted on biospy confirmation. If so, what area was biopsied, and what were the results? My doc wants to biopsy my nose/sinuses, and I'm more than a little reluctant (digging my heels in really), considering that as of now, the WG has not caused any damage to my nose, and the thought of this invasive procedure scares the crap out of me! The results of nasal biopsies are notoiously unreliable, AND with all of my symptoms pointing directly toward WG, I think it's completely unnecessary (CYA - cover your.......er....butt :glare:- that's what I think they're trying to do).
Chris

[Sangye]

Chris, I don't have p-ANCA (+) and don't want to detour this thread. Just wanted to say I think you should definitely get to a vasculitis center and let them decide about the biopsy. If they say it should be done, you can trust them. You can also trust them to do it properly.

[Kathie28]

I was positive for both C ANCA and P ANCA and I did not have a biopsy. My doctors agreed that it did not need to be done for confirmation in my case but I think it is usually the recommendation to get
a biopsy done. My symptoms seem to fit the exact profile of typical Wegs which is why no biopsy. Good luck in making your decision.

[Thakator]

Hi Chris,
I had positive P-ANCA, very high PR-3 markers, nodules in the lungs and a history of "typical" WG symptoms. All of which was enough for my rheumie to dx WG, without any demand for the proof of a biopsy. However, she sent me to an ENT to examine me with an eye towards whether or not there were signs of WG and she asked him to do a biopsy - - but only if he thought it would prove to be meaningful. She said the treatment for Wegs is so severe that a biopsy would be good to have, but only if reasonably possible. The ENTdidn't see enough to warrant a biopsy (said he'ld never do one unless the tissue actually looked suspiciious to him).
Rheumie was then ready to start the WG treatment because, as she said, "This disease works fast and we've got to get right on it." She didn't need a biopsy to reinforce her conclusion. However, (and here's where my story won't help you much) one of those lung nodules was exceptionally large and she felt it best to have its pictures reviewed by a team comprised of a pulmonologist, an oncologist and a cardio-thoracic surgeon because it's size was more in line with a cancerous growth than with the typical WG nodule. If it were cancer, it and a lobe needed to come out - - regardless of a WG issue. Even at the risk of aggravating the Wegs (as surgery is known to do), I didn't have much choice but to go the open lung route. The team was unanimous in this and my rheumie agreed. So, no demand for a biopsy because of any WG question in and of itself - - but a need for one because of the cancer aspect.
They took out a golf-balled sized nodule and did the biopsy. WG it is. Like you, I don't know how many of us there are, but there are some who are P-ANCA Positive yet otherwise typical Weggies in most regards. Hope this helps a bit.
Take care, Ron

[Jules]

Hi Chris - I'm double ANCA positive and have had lung, nose and kidney biopsies. The anaesthetist refused to give me a general for the nose biopsy because at the time WG was not a definite diagnosis and the 'mass' on my lung was giving him cause for concern. . . it was therefore done under local anaesthetic, and while not one of my favourite experiences in life, it was bearable! However, this procedure was carried out because I had severe sinus implications and gave me huge relief after the procedure . . . if I hadn't had those implications I'm not sure I would voluntarily go through it! Whether it was just a coincidence in timing I don't know, but a week after the procedure my nose structure 'collapsed' giving me the saddleback nose, which apparently is 'text book' WG in med school.

[mishb]

Hi Chris, I haven't posted on here before but I thought I would also put my two cents worth in. I am P-Anca positive with very strong positive PR-3 markers. I have seen 3 ENT's and all wanted to do a nasal biopsy prior to me starting any medication. They all agreed 99.9% that I have WG. I had the biopsy done two weeks ago under general anaesthetic and I get the results tomorrow morning. I was extremely worried about the entire procedure but it took about 15 minutes, my nose was bleeding a bit when I woke up but they packed it and may I say, to this day, have not felt any pain in either nostril. The only hassle I felt was after the procedure I was not allowed to lie down for 2 days or eat/drink anything hot for two days and was only allowed a luke warm shower. After the two days was up...well...was a breeze. I wouldn't hesistate in telling people to have it done but then maybe I have just been one of the lucky ones in that nothing collapsed or nothing out of the ordinary has flared. As Sangye said, they know what they are doing.
Best of luck to you
Michelle

[Chris G]

Thanks all. Michelle - I'm eager to hear the results of your biopsy! Please post when your hear from them. Sangye - I hear ya, and completely respect your opinions (you seem to be very well versed with this stuff), and I promise to get to the Cleveland Clinic as soon as is practical. As Jules mentioned, she had significant sinus involvement, and at this point, after being on mtx since Nov., as far as my nose is concerned, I have only very minor crusting and stuffiness (no bleeding) - if nasal biopsies are unreliable on a good day, then with my current symptoms, I would expect them to be totally useless at this time.

What bothers me is that while the rheumys push for the biopsy, the ENT he has never said "Yes, we need biopsies". He said the rheymys like to have everything in black & white, but that he was comfortable with the WG diagnosis, because he SAW the crusting, bleeding, & cobblestone texture with is own eyes. And yet, when I see correspondence between the docs, it doesn't accurately reflect our discussions. It reads something like "unfortunately, the patient has declined" to have biopsies. This is why I sometimes feel like they're just covering their butts. I see the ENT tomorrow, and I think it's time I ask him why he has not adequately conveyed his opinion to the rheymys.

Question: As you know, I'm new to this, so while I've done a ton of research on the disease itself, I don't know what to expect from treatments. When one is in "remission" do we still have some minor symptoms? ie, stuffy nose, runny nose, fatigue? Am I expecting too much from the treatments? I want to feel healthy - I want to at least get through a normal day without being totally exhausted! Maybe that's asking too much.
Chris

[michael99]

I am P-ANCA and DX with WG. I have kidney involvement so it was pretty much essential to have a biopsy which confirmed the DX and the immediate need for proper treatment. you don't mess with major organ failure as this disease can creep up on you fast. I had a second opinion which also confirmed. i would strongly recommend you get the biopsy and be monitored closely. did you have a urine analysis done to see if kidney invlovement?

[Chris G]

No kidney involvement Michael, thankfully. Have had several urinalyses. I'm told that kidney biopsies are the most reliable. The biopsy in question for me is nasal/sinus.

[Sangye]

You probably know this, but just in case... kidney biopsies are only reliable if the kidneys are involved.

[Jules]

Just to mention I was on holiday when taken into hospital with headaches and sinus problems - I saw two ENT consultants - the first 'scoped' my nose and declared there was nothing to concern them - as things took a turn for the worse, his senior suggested a nose biopsy anyway, at which point I secured a transfer back home to my local hospital. The ENT guy there took one look and told me most of my problems were stemming from my sinuses and that he should do a biopsy asap. My rheumy advised that a positive result would help confirm the suspected WGs at that stage, but a negative result would not rule out a diagnosis of WG either!

The result was positive, but it was not until the kidney biopsy was done that the consultants were happy to go the route of starting ctx.

[mishb]

Hi Chris,
Just back from the ENT. Biopsy results are positive for granulomas and now 100% confirmation of WG. Next step is a Rheumy appointment to start the ball rolling with meds etc. They have been contacted and I am just waiting for a call back with day and time. Hopefully it is soon.
Have a great day
Michelle

[Chris G]

Michelle - thanks for the update. What are your other symptoms? I'm glad to hear that you will begin treatment soon (although not glad to hear that you have wegs).

[mishb]

Symptoms are/were constant sinus infections, crusting, nose bleeds, right ear deafness, virtego, red eyes and roaming joint and muscle pain. Started 2009 and has taken this long to finally have biopsy and 100% diagnosis. 2010 was really bad but seems to have become bearable now with just Aspirin and Ibprofun... at the moment....maybe because we have just had a really humid summer and the humidity is still very high or could be the daily sinus washes, not sure, but [as she crosses and fingers and toes] hopefully it stays that way.
Take care
Michelle