How Do YOU Think You Got Wegs (No answer is wrong) And ...

[TOBEY32]

How soon afterwards did it manifest?

Example: Summer of 2010 I had a job working advertising outside wearing a menu board (and sombrero!) for a local restaurant. We're talking 90 and 100 degree weather. I would come home totally zapped. In December of 2010 I began to show signs of (what would turn out to be) wegs. Can I way for sure that was the cause? No - but I've always wondered if that was it.

David

[gilders]

Don't think I actually "got it" such as a bug or anything. I believe from birth I was genetically predisposed to it becoming active at some point. A virus was likely to be a trigger as it first appeared as a stubborn cold when I was 17.
I do believe that my relapses/flares are connected to stress, as they have usually occured during stressful periods.

[mishb]

Same for me Gilders.

I believe that it has always been in me. As a young baby and toddler I continually had ear infections and tonsillitis.
As a child, blood noses were added to the mix.
As a teenager endometriosis and many UTI's, as well as the above
In my 20's Glandular Fever, Meniere's, ear and sinus infections

Roll on to my 40's and I believe that some very stressful situations finally brought WG out to a head.
A serious car accident in May, then breast lumps biopsied in June and then my father passed away in July.
The night of my fathers funeral I ran a hot/cold fever and in the morning woke up with the worst sinusitis I have ever had
- the rest is history.

I believe that stress brings it out.

[gilders]

Michelle, good point about childhood tonsillitis. I also continuously suffered from tonsillitis. I'm sure that I've read many other people with Wegener's tended to have tonsillitis more often than the average child.

[Pete]

I'm inclined to go with a genetic disposition coupled with a response to a stressful event trigger. My Dad had an autoimmune disorder (I was never told what it was.) that flared once in awhile as a rash. My disease came on shortly after our move to Columbus. Immediately prior, I had the sole responsibility of preparing our home in Massillon for sale and coordinating the move. (My wife was recovering from rotator cuff surgery.) We had been in our new home about a month when I started having symptoms.

[TOBEY32]

I never thought genetics, never dawned on me. And until now I've never heard anyone on this site say that. Only thing I would wonder about: Out of 5 kids, why just me? Do any of you have multiple siblings AND one of your siblings ALSO has wegs? Maybe I'm making too much of numbers and not enough of the genetics(?).

David

[Randy]

I believe in the theory of a hereditary gene but something else has to trigger the disease. My maternal Grandfather died in 1939 of an undetermined disease. I read one report where the doctors said they didn't know what was wrong but were pretty sure it was not cancer. From what my mother and aunt's and uncles described, I think he had some form of vasculitis. None of my aunt's uncles or cousins have any form of vasculitis. I'm the only unlucky one. Prior to getting sick with GPA I was never sick, never been in a hospital (except to visit other people) and I can't think of any stressful event that may have triggered it. I think it may have been a virus of some kind but really don't know.

[annekat]

I would go with a genetic predisposition and then added stress or environmental factors. I had lots of bronchitis and asthma as a kid and young adult. Several of us had deviated septums, and other family members, but not I, had tonsillitis. After that, asthma came and went, depending on allergens in the environment. There was also family stress around this time, as my parents fought and eventually split up and it was hard on everyone. I started doing a lot of pottery work in the 1980's and still do. Breathing silica dust has been an implication in triggering WG. One must be careful not to stir up dust, to clean often, and to wear respiratory protection. In the early 2000's, I started having weird episodes of tinnitis. In 2008, I was recovering from a cold and went to a funeral in a church with lots of incense, which made me cough quite a lot. A week or two later I came down with a big bilateral ear infection, having never had one before, and it was resistant to antibiotics. It finally died down with the big gun Levaquin, and my ENT was too late in getting a good sample for a culture. I got IV antibiotic for 5 days after that, to guard against mastoiditis and meningitis. After that, I had recurring sinus infections, allergy tests, allergy shots, with a few joint pains thrown in, and was finally dx'ed in 2011 when it went into my lungs. So, I believe, and my ENT agrees, that the big ear infection was the real start of the Wegs, though my predipositions may have set me up for it. As for the direct cause or trigger, I am suspicious of the clay dust and fumes from firing, various molds, and the incense in the church.

[mishb]

I never thought genetics, never dawned on me. And until now I've never heard anyone on this site say that. Only thing I would wonder about: Out of 5 kids, why just me? Do any of you have multiple siblings AND one of your siblings ALSO has wegs? Maybe I'm making too much of numbers and not enough of the genetics(?).

David

David there are 12 kids in my family. I have two brothers and seven step brothers and two step sisters, however we have been a family with 12 kids, for over 40 years (since I was a child).
We all lived, ate, breathed, played in the same area and not one of them has an AI condition (even my biological brothers) and I have 4 AI's

[NikkiNicole]

Mine is a teeny bit different. While I feel like I was genetically predisposed to WEIRD diseases, my father had Alpha-1 Anti-Trypsin Deficiency. I was fairly healthy except for the occasional BAD flu bug. Then, I had chest pains, etc for 2 years where my doctor passed it off as heartburn. It turned out to be horrific gallstones. When they finally removed my gallbladder, the actual gallbladder itself was very diseased. I thought nothing of it until later when this disease came along and I thought about how my body probably fought at fixing my gallbladder for two years and maybe my immune system gave up the ghost and is now all messed up in the head.
Who knows?!