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marian
10-12-2008, 01:35 PM
Hi

My grandson, Patrick, was diagnosed with Wegener's in August. He is 14 years old. The events leading up to his diagnosis are very similar to those I've read in many of the posts in here. He hadn't been feeling well for several months and our local doctors thought at first he had mono, then lyme's disease, then whooping cough and, finally, pneumonia. Regardless of what medications he was given, nothing helped. By early August, he was so sick it made us all cry. We finally took him to the local ER (for the umpteenth time) where a relatively new doctor thoroughly studied Patrick's charts. He sent us to the infectious diseases department of Fletcher Allen in Burlington, VT on Monday. By the second day, a two-year resident uttered the word Wegener's. At that, Patrick's group of doctors (Pat was the focus of intense interest at the hospital) really came to life and they started doing all kinds of tests. They were sure enough of the suspected diagnosis to start him on prednisone. They told me that Pat's kidneys were still unaffected and they wanted to keep them that way. Their diagnosis was confirmed the next day after test results came from Mayo.

He was diagnosed on the Wednesday. By Friday, he was feeling well enough to come home. By mid-September, he was feeling well enough to attend football practice. Over the past three weeks, he has been playing in the freshman games. Today, we played golf.

I have been doing as much studying as I can about the disease, the medications, and learning about what his doctors call Patrick's "new normal." His response to all the medications is ahead of what they expected. So, we have all breathed a sigh of relief. He is alive, he is in good spirits, and he is feeling great.

I'm curious about one thing that I have read. And, I wonder if this issue might explain why some people go into long remissions and others have problems...other than the speed in which the disease was diagnosed.

There seems to be a difference in the actual cause of the disease. Some cases seem to be viral while others seem to be infectious. I read that some infectious cases can disappear as mysteriously as they appeared. While the viral types are harder to control.

Has anyone else heard of this?

Best regards to everyone....
Marian

Terry
10-13-2008, 09:54 AM
First off, I'm sorry about your grandson's diagnosis, but very happy he's reacting to the medication and that they seemed to have caught it early. I'm so glad he's able to be physically active and look forward to being that way again in my life.

I have never heard anything about W.G. being based on viral or bacterial causes. Mine seems to mimic a bacterial infection, as I have had what seemed to be a sinus infection all year that doesn't respond to antibiotics. The only thing it has ever responded to is Prednisone. There are days when my nose runs so much, it makes my nose sore from all the blowing and rubbing.

So I'd be interested in hearing the take of those who have been into this longer than I have.

Twice
10-14-2008, 07:01 AM
I haven't read anything about differences regarding viral or bacterial causes. I'm pretty sure there's no element of infectiousness, either.

My understanding of the condition (or autoimmune vasculitides generally) is that infection, either viral or bacterial, can trigger an immune response which fails to respond appropriately and, in effect, gets out of control.

I also understand that there are some very suspicious 'groupings' of WG cases around areas with certain types of industrial polution, although others here probably know much more about that than me.

Generally, though, my own suspicion is that we are at least genetically predisposed to the possibility of developing Vasculitis, and that it takes either a certain type, or even a badly timed intervention (be it environmental or infectious) which triggers an inappropriate immune response.

But I'm guessing, and I suspect that's as far as we can go at present.

Sarah

Terry
10-14-2008, 09:26 AM
Sarah, that has also been my understanding of what triggers W.G. It can be different for everybody. In my case, I am obviously predisposed to autoimmune responses. My thyroid disease is autoimmune, I have another autoimmune disease that affects my immune system itself, and I have fibromyalgia. The jury is still out on whether or not fibromyalgia is autoimmune, but I think it is.

W.G. is the logical explanation for why I have green and yellow discharge from my sinuses that does not respond even to 21 day doses of strong antibiotics. In fact, during the last 21 day course of Levaquin, I got worse. At the same time, my knees swelled up and got so painful I could barely walk.

RCOSSIO
10-14-2008, 12:32 PM
I suppose by now Terry you are Cytoxan?

Terry
10-14-2008, 12:48 PM
Richard, I wish that it were so, but I don't see the Rheumy until the 23rd. Thankfully, the eye drops that I've used in the past for allergic conjunctivitis are working, so it appears that's what I am dealing with right now. I'm keeping my fingers crossed that this Rheumy will be experienced with W.G. If not, I'll be off to the University of Washington. I hope I don't have to go to that extreme, but I will if I have to.