Dr. Appt Today

[pberggren1]

Thank you very much Jolanta.

With a broncoscopy do they go down into the lungs past the bronchial tubes?

[Sangye]

Phil, the words that leaped out at me on that report are: "Progression of the cavitating nodules in the lungs" which are later attributed to WG. There was a "marked progression" of one nodule. That's typical of active Wegs doing silent damage. If it's just one or two tiny nodules that appear and disappear, that can happen even with controlled WG. This looks like a general and worsening trend.

It also correlates with your generally worsening symptoms for the past 7 months. I don't think that should be ignored. Wegs activity is determined based on diagnostic tests and symptoms.

Man, I can't believe your rheumy would say you look too good to be flaring. Wait. Yes I can. I've been told the same thing, even when I was hospitalized for "pneumonia" and was flat on my back with profound weakness, sweats and was coughing up lots of blood. And my CT looked like hell. The non-Wegs docs who told me that just didn't know Wegs. That almost cost me my life. When Dr Seo heard that's what they told me, he got pretty upset.

Did Gary Hoffman see this CT result?

I'm sorry that ENT treated you poorly.

[elephant]

Phil you need to send your CT scan of your lungs and sinuses to the WG specialist Dr Hoffman at the Cleveland clinic ( you probably can have your ENT- ask him to send them to the cleveland clinic). I agree with Jolanta and Sangye...that was the first thing that popped in my mind too! You are definitely having a flare of WG!

[Sangye]

Why on earth would they want a lung biopsy? They already know you have Wegs with lung involvement. Every procedure carries risks and should only be done when the benefit outweighs the risks. If that were me, I'd insist on a good explanation.

[pberggren1]

As soon as I looked at the report and saw the lesions on my Pulmo's computer I immediately thought that it must be a WG flare.

I know what you mean about my Rheumy saying that I look too good to be having a flare.

About the lung biopsy. They only mentioned it to confirm WG activity. But to me the CT scan is proof enough.

Gary Hoffman has not seen the CT yet. But I have asked my Rheumy to send it to him ASAP. I think Gary's comment will change once he sees the CT report. He said that before we need to prove recurrence if we use the Rituxan by a biopsy - will need ENT consult.

[Sangye]

This might sound crazy..... Sometimes when they can't figure out if you're flaring it's "helpful" when something undeniable shows up. In your case it's worsening lung nodules. In mine (last summer) it was beginning to cough up blood. Otherwise a flare goes untreated, it drags on and you feel lousy day after day. And damage is done. It'd sure be nice if they could discover a 100% accurate indicator of a flare. I keep picturing something like a mood ring that turns bright red the moment Wegs wakes up. Anyone wanna invest in the research? LOL

[elephant]

I think your on to something Sangye, when I get stressed out ( real bad stress) , I actually spiked a temp of 99.5 or 100, and that is emotional stress.

[jola57]

Oh how sweetly easy it would be with the mood ring for wegs. Phil, in your case the problem is that the cavitating lesions seem to have progressed while your bloodwork is better (if that is true)it was the same case with me when i was spitting blood last year. Before being put back on cyclo I had lung test done. How are your blood test, is anything idicating a flare or just the lungs and sinuses? There are many reasons other than wegs for cavitating nodules this is why a broncosopy and biopsy to rule out any nasties.

[pberggren1]

I don't know what my blood work was like for May. I go once a month and the last time I went was May 5. I only saw my ANCA and my C-ANCA was down to 7 from 11 the previous month. But I do know that in most people ANCA is unreliabe. For my 3 previous flares though the ANCA was a reliable marker. But I also know that ANCA can become unreliable as well.

I have been constantly coughing up bloody mucus and blood since June of 2008.

I know that my April white count was 13,000 and the CRP was 26, both high.

When you speak of biopsy do you mean sinuses or lungs. From what I understand doing a biopsy on the lungs is very risky.

[pberggren1]

I just read an e-mail that I got from my Rheumy and responded to it. Here is copy of it:

Thank You Dr. Markland,

I didn't show Dr. Spafford the CT report. I felt he was rushing and didn't want to deal with me longer than he had to and just wanted to go home for the day. I don't know why he thinks a culture of the sinuses is a waste of time. I should have pressed him further and shown him the CT report. Anyway I see Dr. Franke on Thursday and will definitely show him the report. I will try and contact his office on Monday morning to get him to look at the actual CT itself so he can have a look himself of the sinus areas. I will get my GP's office to fax a copy of the report to him as well.

Thank you for the info on the Alendronate.

I really appreciate you keeping in contact with me via e-mail. I am a little stressed right now with the uncertainty of this being a flare or infections so this helps me immensely in dealing with the emotional side of things.

I came across an interesting article from the Journal of Rheumatology about Mucormycosis and how it may mimic disease relapse in Wegener's Granulomatosis. Here is link to it:
www.jrheum.org/content/37/6/1364.extract

I hope that works. I will fax a copy of it to your office just to make sure.

I highly doubt that I have Mucormycosis. It sounds quite quick and deadly.

What all did Dr. Spafford say in his note? I can't remember if we talked about having samples of the biopsy sent to other clinics for evaluation. Were samples sent away?

Thanks again,
Phil Berggren


Date: Sat, 5 Jun 2010 21:26:32 -0600
From: [email protected]
Subject: RE: PHIL BERGGREN
To: [email protected]

Hi Phil,
I have not forgotten about you by far. I just got Dr. Spafford’s note and no report as yet
Did you show the CT report as I mentioned to Dr. Spafford?
I certainly agree with follow up with Dr. Franke too and be sure to show him too the CT report.
In NO WAY should you stop the Alendronate as you are going to require even more steroids if we have need and get approval for Rituxan.
Dr. M.