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?!

[vdub]

I'm in the genetic predisposition group. I think the first time the disease became active was in 1961 when I was 10. It was a bad year -- I was in the hospital for some unknown condition for over a year. Many, many tests were done. Nothing seemed to help until the doctors tried large does of a new wonder drug that had just become available -- hydrocortisone. Eventually, my condition went into remission, but for the rest of my life I remained somewhat lathargic and tired. Even though, I had two successful careers, I don't recall ever being totally on top of things.

[ohitsacrimebaby]

Winter of 2013, I had 7 sinus infections back to back and i couldn't shake it. ever since, i have never felt right. my fathers side of the family has a history of autoimmune diseases as well.

[marta]

H1N1 vaccine in the 2009 Chicken Little Global freakout. My first symptoms were in Jan 2010.

That's what triggered me.
My genetic predisposition is what allowed me to be triggered.

And some karmic propensity (:sneaky:) but that's all good because I'm paying my karmic debt in this lifetime - ha ha - so it's all roses from here on in :thumbsup:

[gilders]

Auto Immune diseases are common on my mum's side. There's me, my mum, my aunt (mum's twin) and my Gran (mum's mum). With various auto immune diseases such as Lupus.

[marta]

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

Here's a quote from Dr. Noel Rose on the AARDA site talking about Autoimmune Disease in general, but the two things they are quite certain of is genetic predisposition and environmental trigger - and this is for all autoimmune diseases. This is quite interesting. In my family out of four of us (mom, dad, sister and me- Lupus, RA, Psoriatic Arthritis, WG, Raynaud's, Lichen Simplex, and more) all of us have some sort of autoimmune disease and/or disorder.

This is why I started my foundation, because I want to somehow be part of the solution that keeps my daughter from having to go through a similar journey.
I digress, here's the quote:

"Unlike some diseases, autoimmune diseases do not generally have a simple, single cause. There are usually two major categories of factors that are involved in causing autoimmune diseases: genetics and environment. Virtually every autoimmune disease combines these two. Let me explain more of what I mean. First, genetics. Genetics is involved in the development of autoimmune disease, but autoimmune diseases are not typical genetic diseases. What is a typical genetic disease? Most of us have heard of sickle cell anemia, and that’s a genetic disease. That’s a disease in which the victims of the disease have a specific genetic mutation. If you inherit this mutation from one parent, you have sickle cell trait; and if you inherit it from both parents, you have sickle cell disease. We know what the gene is, and we even know a great deal of how that works; so we know the etiology of that disease.

That’s not the way genetics works in autoimmune disease. In autoimmune disease, multiple genes are involved; we have genes that collectively increase the vulnerability or susceptibility to autoimmune disease. What is inherited is not a specific gene that causes a specific defect in metabolism; several genes increase vulnerability or susceptibility to autoimmune disease.
How do we know that there is a genetic basis of autoimmune disease? I can cite three kinds of evidence. The first is autoimmune diseases tend to occur in families. If there’s one case of autoimmune disease in the family, there’s likely to be another case.

However, it is not a particular autoimmune disease; it is generally a tendency to autoimmunity. One family member may have lupus, another family member may have Sjogren’s disease, a third member of the family may have rheumatoid arthritis. That’s one bit of evidence for genetic involvement, and we’ve known this for a number of years. If we ask patients when they come to us, “Is there other autoimmune disease in your family?”–and we actually have to mention them because people don’t know these are all autoimmune diseases–they will usually say, “Yes, my aunt had thyroid trouble…my grandmother had that disease…my grandmother had Crohn’s disease…."
You can find it in the full article here ( http://www.aarda.org/autoimmune-information/the-common-thread/ )
That was what inspired me to start our foundation in my town "The Find The Common Thread Foundation"
This is a great read, and when I first stumbled on it, it hit me like a ton of bricks.
It totally resonated and felt like I had found the road to the answer... it's a long road, but I think it is the right one.

Here's a list of autoimmune diseases and disorders if you want to cross reference any familiar issues:
https://findthecommonthread.com/list-of-ai-diseases-and-disorders/ (http://Here's a list of autoimmune diseases and disorders if you want to cross reference any familiar issues:https://findthecommonthread.com/list-of-ai-diseases-and-disorders/)

[Linda Ikuta]

I went to work in 1999 at a different hospital. It was very stressful. Then my son got expelled for having a little gunpowder he found on the garage floor (from 1800's gun). School had zero tolerance. I had a bad sinus condition to begin with and then I got Pertussis on top of everything else. I think there was a genetic link but the stress and illness triggered it.

[Treesie]

In 1991 I came down with a fever if unknown origin that lasted 6 weeks and finally went away on its own. But from that time forward I would get these little sores in my nose that would come and go and I started noticing subtle changes in the way my nose looked (a slight dimple). The dimple made my nose look a bit more like my mom's nose, so I just thought it was a natural change, but now I realize that the changes over the years correspond with where I had the sores.
I also noticed that my nose ran all the time, no matter what I took for allergies.
In addition, I have suffered through numerous urinary tract infections for decades. Several weeks before my major symptoms began in 2012 I had a UTI and was treated with cipro. My knees and ankles swelled and hurt, so my doctor thought I was having a reaction to the antibiotic and took me off of it. By that time the urine culture showed that the infection was gone, but I still had some pain and swelling that would come and go....and a few weeks later every symptom in the book came out to wreak havoc.

So what caused my WPA? I'd say stress, combined with ongoing infections had a lot to do with it. But I believe without the genetic propensity for autoimmune disorders (which I have in spades!), that I wouldn't be dealing with this.

Dad's side of the family: rheumatoid arthritis, gout, alopecia (a cousin who lost all her hair), type 1 diabetes.

Mom's side: Crohn's disease, goiter, inflammatory breast cancer

Recently I had my DNA tested for ethnicity by Ancestry.com (97% European...so where did all that Native American that my mom's side clings to go!). I then uploaded the raw data ($5.00 charge) to a website maintained by the University of Maryland, and had about 13,000 of my gene pairs analyzed. The number one finding is that I have a lot of risks for autoimmune diseases. That website is Promethease.com (for anyone who might be interested).

A quick update on how I'm doing right now: I flared about this time last year; spent most of September getting infusions of Rituxan (love it, love it, love it!!!) and have been in remission since last November.

Hang in there, everyone, and keep fighting the fight...

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[Treesie]

GPA not WPA (must have started to type Wegener's and switched to GPA halfway through? Haven't had my coffee yet...

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[andrew]

Mine would appear to be genetic. Both my parents have autoimmune conditions - Dad has Pernicious Anemia (which appears more or less settled) and Mum has Hashimoto's. I think mine was lying in wait and triggered by stress during a particularly tumultuous time in my life. Things went sideways pretty badly but I'm more or less in remission now - depends on the phase of the moon and what sun spots are active at the time my bloods are taken :)

[gilders]

Stress seams to be a common theme here.
Maybe the NHS or medical insurance should pay for a holiday for us all to meet up. It could save them money in the long run if we all destress and achieve remission!

[mishb]

Stress seams to be a common theme here.
Maybe the NHS or medical insurance should pay for a holiday for us all to meet up. It could save them money in the long run if we all destress and achieve remission!

I love the way you think :thumbsup:

[little sister]

I think it is probably a combination of many factors including genetics. I was seldom ill as a child except for tonsillitis and tonsillectomy at age 12. Not really any allergies to speak of. Maybe "hay fever" occasionally. Usually if I got a cold I would recover fairly quickly. Fast forward to 2008. Took a really crappy job at a branch of a national drug store chain. Developed severe psoriasis on hands which dermatologist thought was probably due to removing large quantities of wrapping from cosmetics on truck days. I was tested for psoriatic arthritis December 2012 because I suddenly developed arthritis in thumbs but was diagnosed as osteoarthritis. Very stressful job that I quit November 2013. Psoriasis went away almost immediately. Meanwhile one of my sisters also began working for the same chain where she lived in Florida back in 2008. In January 2014 she went to hospital with eye problem. She was back in ER again in March for joint issues. As result of labs done there her primary care referred her to a rheumatologist in April. Soonest she could get an appointment was June. Before the appointment she ended up in hospital with kidney failure. She was too sick for regular course of cytoxan so she was given it at "half-dose". She passed away in Oct.2014. Christmas Day 2014, I catch a cold that develops into sinus infection. After trying several antibiotics my son convinces me to see his ENT. Skipping a lot of the story, by May I am diagnosed with GPA. So.. is the connection just genetics? My rheum at Hopkins says while it is rare, I am not the first case she has seen with another immediate family member. However, my sister would have also been exposed to the same chemicals in wrappers and packaging as I was. So is that the connection? I had also been to visit her for several weeks in 2013 while her husband was in the hospital. Were we exposed to something there during that time?