ANAC and tissue sample confirmation

[LisaMarie]

how many of you have heard that you have to have one or the other positive to have WG?

[pberggren1]

I know that some on the Forum here have had both negative so it depends on symptoms and other blood work and other diagnostic procedures and of course the docs experience.

[chrisTIn@]

I think you mean ANCA?
My ANCA was positive but tissue-samples were negative.

Still the fact that I have WG can not be doubted,
according to my WG-specialist.

[drz]

how many of you have heard that you have to have one or the other positive to have WG?

I have never heard anything about this one way or other. I was told my ANCA scores were highest Mayo lab had seen and very suggestive of Wegener's disease so I guess it is not viewed as 100% indicative marker. My diagnosis was confirmed by a kidney biopsy the next day.

[LisaMarie]

Thanks for your alms input.....Not being able to see Dr specks has really made this a rough week...hopefully I will get to see him end of this week...seeing docs who do not specialize in WG really sucks wish me luck with getting into ENT and having biopsies done.the doc who did the bronchoscopy is concerned since they also found some abnormal tissue in both bronchial tubes and down in both sides...more on the right then the left..I hope thr bad dog has not swakened and moved there. though i sm not he ever went to sleep

[Geoff]

Wishing you well LisaMarie, I with DRZ in so far as my ANCA (PR3) scores were sky high but Wegs was only confirmed absolute after a kidney biopsy. Throw that nasty Wegs dog a bone and tell him to go sit in his kennel.

[Sangye]

Where's that Wegs dog lullaby when you need it?

[Daggar]

Holly had the elevated Proteinase 3 Antibody (PR3 - ANCA?).... they did a kidney biopsy to confirm WG.

Did anyone experience elevated Anti-MPO levels?

[LisaMarie]

My ANAC is negative so they are grabbing biopsies where ever they see inflammation or funky stuff..they took 2 biopsies of my stenosis and 5 from my bronches....waiting for ENT ...Hopefully will be seen and biopsied by them in my nose and sinuses...want to ask them the ringining in my left ear and hearing loss in my right...praying i see Dr Specks tomorrow....if not on Monday...i have never had biopsy done for whatever reason and they deleted the pics of my stenosis prior to surgery will keep u all posted....i know some of use have both negatives in ANAC and tissue...i was just wandering how many....this is such an hard disease to diagnosis...and with all of us being different it is more apparent to me how important a specialist is...the docs here who do not specialize in WG are definately not the ones to see

[cathy2330]

Hi LisaMarie, I haven't been on the website for awhile but I am always browsing and reading just haven't posted anything for some time. When reading your story here it is very similar to mine so I felt compelled to write today. I am Anca Negative and have had biopsies of my nasals and trachea and bronchi all negative. I have sinus issues , inflammation narrowing and have tracheal stenosis and bronchi stenosis. It has been such a difficult road as I really do not fit into a catergory. My rheumis best guess is Wegs or as she says some sort of vasculitis. She has called the mayo clinic (I am in BC canada) and discussed my case and they agree. My ESR has never been over the normal range, my CRP is within normal and at diagnosis approx. 1 year ago no kidney involvement. Around 8 yrs ago, had one bronchial narrowing in the left bronchi and was just monitored with a ct scan every year which showed no changes. Last Jan. I had been struggling with my breathing for over 4 months and went for CT scan which showed nothing new. Doc did a bronchosocpy and from there everything downhill. I spent 6 weeks in the hospital with all sorts of docs trying to sort me out. Seems I had gotten new stenosis in both of my bronchis , now having 2 areas in left and 1 large area in right and tracheal stenosis right near the vocal cords, believe they consider subglottic stenosis. Doc tried putting in stents area was too narrow, failed. During the past year I have had approx. 13 balloon dialations, Have done 6 months of cytoxan, currently on pred. 10 mg and during the last 3 months my GFR and Creatine all out of normal range. Also had a ultrasound on my kidneys as I have been having pain on my right side for the past three months. Ultrasound showed a mass on the upper right kidney. My last round of cytoxan (IV) was in Dec. and have only been on pred. /bactrim since. Seeing kidney specialist on Mond. as I need to know if this is vasculitis related or something totally different.

Had a balloon dialation in Oct. but was noticing by Dec short of breath getting worse, had another bronch and balloon dialation in mid Jan. and Thoracic doc decided that we will need to do at least every 3 months, scheduled for mid Apr. but will do sooner if starting to get into difficulty. Seems it is the trachea that is closing up the quickest right now. Rheumy does not want anymore cytoxan, it did not seem to help much and am considering rituxan or cellcept or nothing. It is a very frustrating thing as there is not a lot of proof if rituxan will help existing stenosis's ( I have been researching as best as I can) and doc who did bronch. does not see any ACTIVE inflammation. I am getting another CT scan on sinus in Mar as approx. 1 year ago had nasal surgery to clean out all passages. Problem for me is deciding if I am having active disease then would really feel rituxan is best option, but do not want to put any more toxins in my system if it will not do anything. It seems I will have to be constantly dialated but also concern as more dialations can cause more scarring and quicker which is not good. Also, as I have had so many dialations after each one now more complication, oxygen sat. dropping, needing adrenal and having to stay in hospital for 1 - 2 nights as narrowings are swelling and breathing very bad until swelling starts to reside.

Anyways, I always do read on here but my situation is so wierd but I as wondering if you knew anymore about stenosis's (as you seem to have same issues) and whether the meds will help. I know I do not (as doc say CANNOT afford anymore narrowings for him to keep dialating) but I don't know as through my ESR/CRP etc it does not seem to be active and right now I just need to control the existing. Also need to get confirmation on kidneys, do you know if biopsy is the only way to seem if inflamed????? Thanks for any advice and if you have any questions that might help you I would be happy to answer if I can.
Good Luck with everything. Cathy