Blood Work Pointing to WG - No Active Symptoms

Hi - I went to my primary care doc last month for a bad cold. He was concerned about a few nodule like things he saw in my lungs on a standard chest x-ray. He ordered a cat scan and referred me to a pulminologist who ran a ton of blood work. Got the results today and a preliminary diagnosis is Wegeners. I'll have a biopsy next week to rule out cancer and more fully diagnose.

The thing is, aside from the nodules, I feel great and am symptom free. Odder still, a second review of a x-ray and a cat scan from 2007 when I had pneumonia reveal the same three lesions in the same place, with very little change over 16 months that has elapsed since.

Has anyone had a similar experience? If so, I am interested in your treatment and recovery. :confused:

I know that nodules (or other Wegs stuff) can develop silently and progress quite a bit before symptoms appear. I also know that my first chest x-rays showed only vague effusion that we thought was pneumonia. They didn't worsen much at all for almost 3 months, even though I was becoming severely anemic and had been nearly crippled with joint pain for 8 months. Finally, the radiologist said he could no longer be confident it was pneumonia-- the effusion looked weird and was progressing. A CT scan showed severe hemorrhaging.

It's good you're getting a biopsy to know for sure.

I think that the only sure way of diagnosing Wegener's is a biopsy as everyone's blood results seem to be different, so you should know for certain after next week's test. If it is Wegener's, I would think that the prognosis is good as it is seldom detected in someone showing so few symptoms.

Yes, if this is Wegener’s I have, I feel blessed to have connected with a pulmonologist who has diagnosed WG before and knew to order extensive blood work, including an ANCA panel among many other tests. The more I read, the more I understand WG is often a mystery disease that can go without a proper diagnosis for years.
Scheduled my biopsy this morning for March 4, so will know more in a few weeks.

i never had anything in my lungs... or my kidneys. thank GOD i had a very bad cold for about 8-12 months. i has sinus sx to clear out the sinus (totally impacted) it took another 3-4 months to figure out it was WG. you dont need the lungs or kidneys to be involved for it to be WG. it is more of a localized or limited wegeners to just stay in the sinus and upper airway. it has affected my trachea (subglottal stenosis) and my sinus... hole in my septum. they have figured out it is WG and put me on tons of steriods (pred) so it has not gone further. hate the pred but i love to breath!

I hope your docs have a lot of experience with Wegs. Are you on an immunosuppressant also or just pred? Pred alone is not sufficient to treat Wegs-- that's been well established in the research for many years.

Not to alarm you too much (some alarm is good because it might save your life) but I wouldn't consider subglot stenosis or holes in your septum a mild case. Those are serious things and indicate pretty active disease. Also, Wegs isn't like cancer, where the docs can more easily determine that it's localized and will stay that way unless it metastasizes. Wegs is arbitrary and can flare up in any part of the body. You may never have more involvement in other areas, or you might. I'm sure you've noticed that's happened to a lot of people here.

i was diagnosed at a teaching hospital then went to johns hopkins to get a second opinion. i still occasionally see a doc there when my insurance lets me. i am now off the pred after 1 1/2 yrs. i am on MTX, folic acid, bactrim and a daily vitamin. i feel i am getting good care. i see a rheumy every 3-4 months for the usual blood work and check-ups. my rheumy here in richmond can call hopkins anytime if need. i just keep fighting with the insurance co. so i can get the best care.

I'm relieved to hear that! I go to Johns Hopkins, too. I see Dr Seo there-- great guy. Insurance fights, bleh. Your local rheumy could write a letter stating that s/he feels you require the ongoing, specialized care at JH, given the rarity and unpredictability of Wegs. Maybe you've already gone that route?

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Originally Posted by bizezgrrrl

Hi - I went to my primary care doc last month for a bad cold. He was concerned about a few nodule like things he saw in my lungs on a standard chest x-ray. He ordered a cat scan and referred me to a pulminologist who ran a ton of blood work. Got the results today and a preliminary diagnosis is Wegeners. I'll have a biopsy next week to rule out cancer and more fully diagnose.

The thing is, aside from the nodules, I feel great and am symptom free. Odder still, a second review of a x-ray and a cat scan from 2007 when I had pneumonia reveal the same three lesions in the same place, with very little change over 16 months that has elapsed since.

Has anyone had a similar experience? If so, I am interested in your treatment and recovery. :confused:

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My first symtons were a real bad cold that the Doc tried treating with antibotics for about three weeks and then decided to take x-rays. When the results came back it was very possible that I had lung cancer until proven other wise. After CAT, PET and MRI scans the pulminologist that I had performed 3 different biopsys. The first was a needle biopsy of the lungs then he went thru my nose and got a biopsy from inside of my lungs. All of the scans came back negative for cancer and the first 2 biopsys came back negative so the Doc decided to do a lung biopsy which came back negative for cancer. The next step was to send the biopsys to the lady Doc in New York that is supposed to be "the" guru lung specialist in the U.S.. My pulminologist and the guru both agreed that I had BOOP and this same guru is the same one that agreed later that the diagnosis was WG when my ENT sent her a sample of the biopsy from my sinus. I asked my pulminologist how this happened and he explained to me that unless they get the right spot with the lung biopsy it would be possible to miss the diagnosis which my Doc did.
I have since changed pulminologist and the one I have now is a great Doctor and I also have a great ENT.
My WG started out with just the lungs but had been destroying my sinuses silently. My lungs still have the spots on them but I have been progressing good after taking the prednisone and cytoxan. It was in April of 07 when I started having symtoms. Where I'm trying to go with this is always be aware of how you feel and don't stop trying to find the answers until you feel it in your gut that you have the right Doctor and he are she is doing the right things for you and don't ever stop asking questions