What causes Wegeners?

[Birdie]

Wherever you look Wegeners is listed as cause unknown OR caused by infection.

I had a severe and totally out of control c-diff infection. I have absolutely no doubt that this is what triggered Wegeners.

Anybody else?

[Pete]

I dunno. My first symptom was an ear infection that did not respond to the usual treatment. I added a cough, night sweats, loss of appetite, and general fatigue. I was diagnosed about a month after the ear infection started. Up until then, I had been the picture of health...

[Birdie]

One vote for "cause unknown".
Thanks Pete.

[Pierre42]

When I was DX'd in Sydney they had a serious cluster of cases at the same time (from memory same number of cases in Sydney in one quarter that they'd expect statistically for The Entire Nation in one year).

The specialist told me "from this we'd imagine there's some kind of environmental trigger".

So far I'm inclined towards a combination of:
1) genetic predisposition
2) diet
3) biological or environmental trigger

[woz]

I told my Wife it was the job that I do, and the doctor told me to retire, and get my wife to get a second job. I wont repeat what she told me,
and guess what.... I am still working.

Regards Woz...

[MikeG-2012]

Mine's almost the same as Pete's, but took two years after the ear infection for me to get admitted into the hospital with more symptoms so it could be diagnosed.

[annekat]

Mine's almost the same as Pete's, but took two years after the ear infection for me to get admitted into the hospital with more symptoms so it could be diagnosed. Mine's like Pete's but more like Mike's! The big weird ear infection that seemed to come from nowhere, and was resistant to the usual antibiotics, followed by two and a half years of sinus and ear problems, followed by lung involvement which led to a diagnosis. So could be that the ear infection triggered the Wegs, or else, as it seems to me, it was PART of the Wegs, the initial noteworthy event, and the Wegs had been triggered by SOMETHING. Two weeks before, I'd had a cold and then been heavily exposed to incense in a Catholic church, and I am not Catholic... it was to the point of violent coughing during the service. I work with clay and have been exposed to silica dust over the years, also considered a trigger. Also, I had had various ear weirdness such as tinnitus and fullness off and on for about 8 years prior to the ear infection. I had had allergies and asthma off and on throughout my life and a lot of bronchitis as a kid and occasionally as an adult. All of these I see as either triggers, symptoms, or hints at a predisposition, but not really causes.

[Debbie C]

I was fine until I moved backed to Ohio. 2 months after moving here I had a hard time breathing so a dr. gave me a nebulizer machine. I called people out to clean our furnace vents and they said the house used to burn coal in the furnace, and that the vents were black. I also a got ear infection that the antibiotics ended up giving me c-diff also ( lost 20 lbs and thought I was dying ) It wasn't until about 5 months later I found out I had wg. So I think in my case it was environmental ????? I never did like OHIO. Its weird though how a lot of us start out with ear infections.

[annekat]

Its weird though how a lot of us start out with ear infections. I think the ear infection thing is very weird, too. I never had one in my whole life, unless maybe as a baby, and then whammo! Picked one up at age 58 out of the blue. And it wouldn't respond to antibiotics until we used the big gun, Levaquin, along with prednisone. My subsequent recurrent sinus infections would respond to antibiotics when combined with prednisone. But we kept having to change the antibiotic, and once off the meds, they would come back within a few weeks. And the whole time, I had a froggy voice and lots of unexplained coughing.

We know Wegs isn't an infection, but it tends to mimic infections and other things, and there must have been some infection in there, too, if antibiotics did anything at all. I might theorize that once Wegs is underway, there is inflammation that causes blockages in the ears and sinuses, which allows bacteria to build up in trapped areas where it can't drain, such as the middle ear, and infections are the result. Plus it could have been triggered by an infection in the first place, setting the stage for more infections as it works its inflammatory damage upon our tissues.

So which came first, the infection or the Wegs? Add in the environmental triggers and hereditary predispositions and you have a big mystery on your hands.

[Birdie]

So which came first, the infection or the Wegs? Add in the environmental triggers and hereditary predispositions and you have a big mystery on your hands.

I see no mystery.

The autoimmune system's job is to save you from infections. Wegeners is an adaptation of the autoimmune system. Get an infection you can't easily beat and your system reacts. It has a vast number of methods of doing that and tries one after another until the infection is halted. The greater the threat, the more desperate your autoimmune system's reaction. MOST of the things done by the autoimmune system are reversed once the infection stops. Wegeners is not. Most of the ways in which it adapts don't kill you. Wegeners does.

About a third of the case studies I read indicated the patient had some serious major recurrent infection, like c-diff or ear infection, listed in their medical history as part of the case study. About two thirds made no mention of a prior/incorrect diagnosis while one third had at least one wrong diagnosis before WG. Those with a wrong diagnosis, if mentioned at all, had c-ANCA counterindicated.

[SandySH]

Hi Everyone,
I am a new member as I was just recently diagnosed. The doctors didn't know what was wrong with me. I think they thought I was a hypochondriac. However, after rash, cough, sinus issues and blood in my urine they started to look a little closer. I was fortunate to have a technician tell me my kidney levels were dangerously closed to dialysis numbers. Anyway, that is when it soaked in. I asked for a testing of Wegener's as my sister died of complications from it two years ago. I lost my older sister at 52 of chronic pulmonary disease and my younger sister has COPD...coincidence? I think not. So I agree with Pierre 42 about the genetic predisposition.

[Wegetarian]

[QUOTE=Pierre42;99645]
1) genetic predisposition/QUOTE]
I think that if you don't have the needed genes you can't get wegs. I assume that there are probably more weg's in my tiny country than in the entire continent of Africa and China combined, which shouldn't be the case if an infection can cause wegs. i saw a map on some research paper which outlined the places in the world where different vasculites are diagnosed. Can't really remember much about it, but it showed that some vasculites were common in some parts of the world and not in others.

I did read that a staph infection in your nose can trigger wegs or a relapse. I had it in my nose when I was dx'd.

[MikeG-2012]

I did read that a staph infection in your nose can trigger wegs or a relapse. I had it in my nose when I was dx'd.

Me too. Staph infection was consistently present during my original diagnosis as well as during my first flare up. Coincidence? I think NOT!

[Wegetarian]

Mike, here are a couple of articles discussing the link between relapses and staph infections if you are interested.
http://annals.org/article.aspx?articleid=706976

http://www.biomedcentral.com/content/pdf/ar392.pdf

[LCL2013]

To my knowledge, I've never had a staph infection. That being said, my PCP was originally treating me for sinusitis, so put me on at least a couple rounds of antibiotics, which did absolutely nothing of course, since my symptoms weren't actually the result of an infection.

[txrepub4God]

My nephrologist and a rheumatologist both told me that once you get one autoimmune disease, then your body is more apt to wig out and produce more AI diseases. Certainly true in my case - I was diagnosed with IgA Nephropathy at age 23 (chronic kidney disease), which is an autoimmune disorder that attacks your kidneys. I guess my body bored of playing around with kidneys and moved on to other organs to eat in the form of WG. I guess at least my body is a creative sort.....didn't just sit around and want only kidneys. My body is a go-getter - a go-getter of organ systems!

Actually, there is a pretty good theory behind why people get IgA Nephropathy. Your tonsils are designed to hold ALOT of infection, and they keep recycling it throughout your body if you tend to get sick all the time as I did as a child. I would get strep throat, bronchitis, tonsillitis, and sinus infections all year long. I was in a household with adult smokers, so I'm sure that didn't help. My family was very, very poor and we didn't have any health insurance, so we hardly ever got trips to the doctor. No one ever thought, "Hey, maybe we should take her tonsils out so she'll stop getting so sick!" It wasn't until I had health insurance on myself in my early 20s did I finally get so sick that the IgA Nephropathy was found through a kidney biopsy did the nephrologist and ENT put 2-and-2 together and had me get a tonsillectomy. I believe that 23 years of infections running through my system from those DISGUSTING tonsils they pulled out really wrecked my immune system to the point it's scarred for life. The ENT said there was so much pus that came out of my tonsils, well, let's just say ewwwwwwwwwwww.

So, I believe if a child is sick all the time and their tonsils are constantly swollen and full of goo, have them taken out. You'll probably save them from a lifetime of autoimmune diseases.

[mishb]

I love the thread the Alysia started.
It might help you piece something together.

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3879-our-private-hypotheses-about-our-wg-etiology.html