Lung problems

[gwenllian111]

Hi all,

Had a dry cough for a while, then, one Sunday morning, I had terrible chest pain and was admitted to the ER. Had an X ray, which showed consolidation on the left lung. The doctors werent sure if it was WG or pneumonia. Is this confused a lot in WG?

How serious can it be? I feel like i could die any day!

Oxygen levels fine throughout. Recently had Ritixumab, and on pred.

Thanks!

[elephant]

Thanks for the update and hope things turn around for you soon.

[Thakator]

Hi,
Yes, they can easily be confused - - especially with only an x-ray as the primary diagnostic tool. That's why a CT scan is usually preferred. Even with that, the confusion is not always resolved. A bronchoscopic test of what's actually forming in the lungs is the way to determine what's going on; they can not only see while in there, but grab a sample and do a biopsy while at it.
If they can't determine whether it's pneumonia or WG, then they must treat for both (high doses IV antibioitics and pulse sterioids). At least this has been my personal experience and this is what I've been told by both pulmonologists and rheumotologists. Although, your oxygen levels staying normal may negate this confusion iin their minds - - it usually goes down if you're developing lung nodules or infiltrates because of the wegs (I don't know about that if it's pneumonia). Also, I don't know what their use of the term consolodation means. Either way, it is something that can come on very quickly and either one can be very serious. In my case, a CT showed clear lungs one day and less than 36 hours later I was being helicoptored to my medeical center with oxygen levels less than 80%, the chest pains you referenced and serious shortness of breath. All came on very quickly.
Even with a new CT, they still weren't sure if it was pneumonia or WG, but they could never get my BP low enough to safely undergo a bronchoscopy and so I got the tretment for both. As it turns out, the diagnosis was a WG flare with the formation of ground glass infiltrates in the lungs and hemorrhaging rather than pneumonia. All of which were cleared up before being discharged. Confusing, yes; serious, yes. If this situation persists for you, please ask them about doing a CT for greater clarity and the possibility of a bronch w/biopsy to define the true nature of what is seen on the x-ray. Good luck, Ron

[gwenllian111]

Thank you for your reply. Ron - so sorry to hear all that you have been through, it sounds as if you've had a very hard time.

I had a CT scan whilst I was in hospital, with the radiologist report specifying that they couldn't rule out a WG flare.

What medications did you go home on from hospital? Did you carry on a high dose of pred, and did you recover fully afterwards from your lung problems? Did you have very high blood pressure?

[Thakator]

Yes, that's the thing - - a CT is notably better than a mere x-ray and thus warrants their use. However, with WG being and looking the way it does, it is often more than difficult to definitively differentiate between it and pneumonia without going inside for a look. Hence the bronchoscopy. Not your radiologist's lack of ability, just in keeping with the nature of our beast.
Even after having IV meds administered to lower the BP, they couldn't get mine below 195/125 (with a heart rate of 171) before abandoning the broncho attempt.
As for medications, I was discharged with an rx for Levaquin at the rate of 750mg/day for a few days in order to complete an anti-biotic regimen started in the hospital - - as well as 90mg Pred/day (Sangye didn't like that, because she's always looking out for us), Bactrim 3x/week, 150mg oral Cyto/day, 0.75 ml Mesna/day and calcium + D. Down now to 70 on the Pred, but up to 200 on the cyto. All else is the same.
Have I fully recovered? From the flare, mostly I guess (although I'm stil looking over my shoulder for one of those sneek attacks). Certainly recovered from the immediate concerns. A CT taken two weeks after discharge showed continuing clearness of the lungs and I'm neither coughing nor hacking up anything. Good signs for sure, but - - as for being fully recovered I'd have to say way too soon for that, not until the old wegs gives up for awhile and I find myself in a state of remission. And, even then, I'll know the story isn't over because WG, coupled with the effects of its required treatment and the relapse rates, doesn't seem to often lend itself to a full recovery. Recovered from this round though, as I hope that you do from your current one and in a most timely manner. Ron

[Thakator]

PS - -this is strictly a personal opinion, but - - if they discharged you after declaring that they couldn't rule out a WG flare and they didn't rule in anything else and they didn't have an answer as to just what that consolodation in your lung is, then (by their own logic) you could be in the early stage of a flare and you most assuredly need to get an answer to that ASAP. You wouldn't like one of those helicoptor rides in the middle of the night.

[Sangye]

Gwen, I'm sorry to hear about this! Yes, Wegs and pneumonia are very often confused. It's happened twice with me.

Thakator, they don't necessarily need to do pulse steroids. It depends on how badly the lungs are hemorrhaging. In 2006, mine were in a severe hemorrhage, requiring pulse steroids. But in 2009, the hemorrhage was less severe and Dr Seo only put me on 20 mg pred for one month while the ctx could kick in. This is why it's so important to have a Wegs specialist making the call.

[LisaMarie]

Gwen
one reason i m going to mayo is to see if my hospital stay in september was WG in my lung or a funky lung infection...broncho came back negative but prior to my admission my CT showed ground glass mosac infiltrates ....i was treated for both and almost died....still have to use o2 ...and still recovering..can not seem to get pred lower than 40mg....hope they determine what is going on for u...have a good night

[gwenllian111]

Gosh Lisa Marie, i'm so sorry to hear about what you've been through. I hope you get well soon xx

[LisaMarie]

Gwen,
I hope u get better soon too...I am at Mayo praying for a better game plan....hopefully will see Dr Specks before the end of the week...had a bronchoscopy yesterday definately the best experience i have had with a bronchoscopy...now waiting in results from the biopsies ....keep us posted on