Our private "hypotheses" about our wg-etiology

[Alysia]

Hi,
Thanks, Marta, for the enlightening post under the thread of Agent Orange :thumbsup:and thank you all the others that wrote there. Tough-provoking….
So I thought that it can be interesting if we share and collect to one thread our private hypotheses about what lead to our wg, not necessarily in relating to the issue of Agent Orange or to the issue of vaccinations, but to WHATEVER….
My list is short one:

Genetics:
I don’t have more AI in my family. BUT my parents are relatives.

Environment:
Exposure to Mycoplasma in the month of the acute onset.

Stress:
1. guilt feelings.
2. 2 separations.

[Michael Bell]

Not at all sure, I have worked in the building industry so will have been exposed to silicon. I had no major stress in my life and there is no other member of my extended family who have an auto-immune disease. I hope that someday the good people researching this can find the cause or causes.
Mike

[windchime]

I had mono at age 16 and 18. Diagnosed with Wegs at age 20. Symptoms were limited to lungs no treatment at the time.

I also had vaccinations when I entered the Air Force at 18.

Tons of stressors in my life throughout the years.

No AI in my family until 2 years ago and my sister (only sibling) was diagnosed with Sjogren's.

We were both raised in NW Illinois, so there were plenty of pesticides flying around as this was corn country. I remember liking the smell of the mosquito spray when the truck drove by. Who knows what banned substance was in that.

[Pete]

My Dad died of complications from bullous pemphigoid (an AI skin disorder) at age 86. He had had this disease (or something like it) most of his adult life.

I worked in steel mills and foundries for awhile during my early career (before age 30). Was probably exposed to silica and asbestos.

Stress: In the months before disease onset, we moved from Massillon to Columbus (about 120 miles). I was responsible for getting our old house ready to sell and keeping it that way as my wife has recuperating from rotator cuff surgery.

[Debbie C]

I had alot of stress with divorce and my father passing. I don't know if any of my relatives have an AI disease,noone in my immediate family does. I really was pretty healthy until I moved from Florida back to Ohio and it was just a short time living in this house that I got sick. When I had the furnace ducts cleaned, the guy said they were so black( like tar ) that they probably heated the house with coal ????

[Rose]

1) I was under severe unrelenting stress for a year before becoming sick starting in August 1988
2) In September 1989 My son came home from Nursery school with gastroenteritis. My husband and myself caught the bug...I never recovered. This was the star of my WG journey although I was not diagnosed officially until 2008. I had suffered for 17 years with at times debilitating gastro issues and every test came back negative. When the lungs and kidneys became involved in 2007 I was diagnosed with WG and soon after treatment my gastro pain and discomfort improved by 100% I had a flare in 2010 and bowel symptoms raised their head again. A colonoscopy was performed and then they looked for signs of vasculitis and found them.
3) I am from a large family and all very healthy when young. My older sister was diagnosed with Pulmonary Artery Hypertension at the age of 66 years and died from this 2 years later. Not on the list of Auto-immune conditions but there is a connection. Another sister now 60 was diagnosed with RA at the age of 40 and then the youngest in the family was diagnosed with Hypothyroidism about 7 years ago. ( I was also diagnosed with this about 10 years before WG diagnosis though I had vasculitis in my bowel at the time though undiagnosed then) The others are all well and healthy in their 60's.

[ingemlb]

I have a long history of autoimmune disease starting at puberty. Severe endemetriosis. IBS, lots of bowel obstructions years of sinusitis. Ringing in ears. Chronic cough and bronchitis. IBD. chronic stomach ulcers. Recurring corneal ulcers and general eye inflammations and lots of acute infections (pneumonia, pleurisy, bronchial obstructions, c-diff, cellulitis ) most of these settled whilst I was on a trial protocol that was immuno stimulative. I have a feeling I either over stimulated the immune system which may have triggered the WG OR it was lurking around for years anyway.
Family history is both parents had diabetes. My father died from Multiple System Atrophy (MAS or also known as shy dragor) in 2005 aged 75. I have a niece with MS. My mothers brother had diabetes so did my fathers father and grandfather. My youngest son suffers from schizophrenia also now recognised as an autoimmune disease. Our oldest son has diabetes and hemechromatosis and I am a carrier with high ferretin levels. Have 2 brothers with bipolar and many psychic illnesses in our family.
research I have studied over the last 7 years would indicate the cause of all these are microscopic bugs that infiltrate the immune system and don't respond to antibiotics. We inherit a lot of these bugs from our parents and then life events add to the load including pollution immunisation being exposed via travel to bugs our immune systems didn't developed antibodies for when we were children and the crappy diets we live on with foods shoved full of pesticides hormones and antibiotics. At some stage some of us get to an overload situation and our immune systems either shut up shop or go amuck and attack things they should be leaving alone.
So ... Genetics is not only the genes we inherit but also a truckload full of bugs. We call it a pea soup of pathogens and at some stage it all gets too much and we succumb to disease.

[Titus3:2]

Interesting thread.I come from a remarkably physically healthy family,as far back as I can remember.Guess I am the unlucky one.I was raised in quite the dysfunctional family.I have always had abnormal feelings of guilt.W.G.certainly has caused me a lot of stress,and I firmly believe in my case stress has caused me to relapse at least twice.However I have no idea what could have caused me to develop this disease.Things are going good now,with a little help from Vodka.LOL.

[ingemlb]

ah yes forgot to mention the stress factor. We had a most stressful year last year. Mum was living in NZ and suffering from bladder cancer and diabetes, blindness. My sister was her carer. I made frequent trips over there when things got critical. Our youngest son had a total breakdown and we had to move him out of home into supported care which was the hardest thing I ever had to do. We had planned a holiday in Europe for 2 months in the middle of the year but both my husband and I were sick the entire time. I ended up back in NZ shortly after our return where Mum was hospitalised and broke her hip. I had power of Attorney and had to sign for her as she was spaced out on morphine for an operation which we were told she was highly unlikely to survive given the fact that after breaking her hip she suffered a heart attack further weakening an already weak heart. They then couldn't operate for a week so she was put on high morphine and hardly conscious but still in agony. All that week was incredibly stressful. She survived the operation but never made it back to my sister's place and had to end up in a hospice. On my return from NZ had sinus surgery. Shortly after that ended up a week in hospital with severe diarrhea, dehydration and a UTI with high fever. Then came back home from that to be told Mum had stopped eating and was dying. She took 3 weeks to die and died one week before Christmas so we were rather busy organising funeral services and christmas as we had visitors coming to stay with us over Christmas. It was Boxing day (26th of Dec) that all my vasculitis symptoms started and by the 20th of January I could hardly move with pain and on the 21st was admitted to hospital where I stayed for 5 weeks. That's when I was diagnosed with Wegener's.

So I would have to say STRESS was a HUGE factor in my life. Has been ongoing for many years. I was carer for my son ever since I can remember then for one year before heading to NZ Mum moved in with us too so I was her carer. And at the same time not coping very well with my own health.

Also need to mention that airplane travel always made me much more ill. My last few years at work involved constant long haul trips and we believe that made all my conditions a whole lot worse. I find now when I fly anywhere I end up sick at the other end. It's the deprived oxygen in the cabin coupled with the nice way the germs are spread around amongst everyone that does it. Also flying itself is stressful. Last year I had 4 flights to NZ (only 3.5 hours each way) and then flew from Melbourne to Kuala Lumpur (8 hours) Kuala Lumpur to Frankfurt (14 hours) Duesseldorf to Spain (6 hours with stopovers) Spain to London (2 hours) then London to Kuala Lumpur(14 hours) and Kuala Lumpur to Melbourne (8) hours. Of course stay overs in between but all that flying around meant I never recovered the entire 2 months. Many of my joints were aching and I only realise now being on Prednisolone how much pain I was in most of last year! It's amazing what you get used to :(

[mishb]

Wow, it appears that I have had a number of AI's on Marta's list for some time.

Endometriosis at age 25
Glandular Fever (not an AI although Chronic Fatigue is) at age 29
Meniere's Disease at age 35
High Blood pressure at age 39 (not an AI but I see a pattern in age forming)
Rheumatoid Arthritis at 43 - Diagnosed at 44 (out of pattern)
Uveitis at 45
Scleritis at 45
Wegener's Granulomatosis diagnosed at age 45 - although it took over 12 months for diagnosis)
Mixed Connective Tissue Disease at age 46 (but was probably there at 45 as well)

Everything (well nearly) appears to have happened at the ages ending in 5's and 9's
.......arghhh, I am 49 this month - what is next??? my lovely husband said - Remission :thumbsup:

Genetics:
My mums sister, a few years ago, was diagnosed with Rheumatoid Arthritis, so was her son.
I don't know of anyone else with an AI disease in my immediate family.

Environment:
Exposure to black mould found in walls during a bathroom renovation

Stress:
1. Serious Double semi trailer Vs. my tiny car, accident in March 2009. Thankfully apart from a few aches and pains, I was not hurt but the potential to be, could have been life threatening.
2. Breast lumps found in late June 2009
3. Mammogram and ultrasound found 18 lumps in one breast and 23 in the other in early July 2009
3. Step father of 30+ years passed away unexpectantly as a result of blood clot in groin in July 2009
4. Core biopsy on 3 breast lumps the day before step fathers funeral July 2009 - turned out to be benign fibroadenoma's.
5. Step fathers funeral and burial July 2009

High fever presented on night of funeral and woke up with sinusitis and blocked ears the next morning.
- Diagnosed with WG August 2010

The rest, as they say, is history

[Alysia]

my "likes" are for the reply... but most of the lists are too sad :crying: :w00t:

[greenjeep]

Right after dx I read that the cause was unknown but it could be exposure to silica. Well, I live in west Texas, USA. Some days the sun is blocked out by "silica". But there is no epidemic here that i know of.
We also have a large cotton farming industry here and I've heard some nasty things about what harvest time can do to a person, but again, no epidemic.
My other hypothesis - I'm a worrier - always feel stress. That is one thing that WG has forced me to find ways to work on this negative attribute.


Sent from my iPhone while driving on the freeway.

[ingemlb]

Sent from my iPhone while driving on the freeway.

I hope greenjeep you are a bit of a joker LOL or I will be looking very hard on every freeway for someone typing into their iPhone

[annekat]

I make pottery and have been exposed to silica. Not a problem with wet clay but with dry dusts from clay and glazes. Cleaning well and wearing respirators is important. But I was not always as careful as I should be. The well-known potter's disease is supposed to be silicosis, a disease very damaging to the lungs, and I can think of one famous potter who died of it. But I don't hear of it often at all. And silicosis is not Wegs, and I have Wegs. I must continue with the pottery in order to have income. I try to keep the dust exposure to a minimum.

I have had a lot of stress in my life.... was a victim of childhood bullying, had a dysfunctional family life, was painfully shy and withdrawn. As an adult, have been in dysfunctional relationships, though not abusive, have had trouble focusing on any career track, have gone through the considerable stress of my parents' divorce and its effect on my younger siblings, have gotten into too much debt, and am constantly under stress about keeping bills paid, reducing debt, and not getting any further into it. Have never been married and have the constant stress of having to take care of everything alone. This is not the kind of stress suffered by the most unfortunate people in the world, by any means, but it is still an underlying factor in keeping Wegs under control.

I have suffered from allergies and asthma off and on throughout my life, starting in childhood. I had the stress of people not paying enough attention to it or making sure it was properly dealt with, even though my dad was a doctor, and being more or less left on my own with it. I always felt like the allergic reactions were made worse by emotional stress. When I became a young adult, better inhalers became available to me for the asthma, but still not the best. I did not get access to good allergy treatments until I was in my fifties, and then I got Wegs.

About 10 years before my dx, I started having weird tinnitus and head congestion. This kind of thing always happened around the time of seasonal pollen allergies, even if my allergies weren't particularly acting up that year in the usual ways.

My Wegs flared up for the first time about 2 weeks after I had had a cold and then gone to my cousin's funeral and inhaled some very strong incense. This initial flare consisted of a nasty, drug-resistant ear infection in both ears, followed by more than two years of recurring sinus infections and severe allergy problems. Or so it seemed, until the WG went into my lungs and I was dx'ed.

[renidrag]

I worked in the plumbing industry for almost forty years and have inhaled everything from lead fumes, asbestos,oakum dust to PVC cleaner and glue and everything in between. Apparently I didn't think I was damaging my lungs enough so I also smoked for over thirty years. That being said I had major dental infection in upper teeth. I was exhausted even after a good long nights sleep. Finally had to have teeth pulled and things seemed to be okay for a while. Before diagnosis in 09 I was faithful to visit for an annual physical and would always ask why pain here, pain there, blood in stools, SOB, fatigue, fatigue. Finally got diagnosis when I went for physical and pointed out a ganglion on my sternum and between fingers. Was sent to Pulmy for SOB and he diagnosed.
No major family problems although I was raised by a single Mother but with two sisters and a brother we relied on each other a lot and even today we are very close.
Mother passed day after my dx.
I would say usual stress, divorce, child rearing (two, both wonderful people) bill paying
Today I do worry about money a lot.
Dale

[annekat]

Well, I did not have the responsibility of raising children, which would be huge stress in itself.

Forgot to mention mold, several kinds of which I've been found allergic to. I sell at a farmers market in an open air structure with open drains and lots of other dark, damp places where molds could grown unnoticed. They do clean the place but I don't know how intensely. I remember having bad asthma in an old cabin with mildew likely lurking everywhere. I think molds are just about everywhere, except maybe in the warmest, driest places, and must affect a lot of people. It also seems the increased industrialization and development of the world over the last couple centuries, with all the substances involved and disturbance of the natural state of the earth, would mean an increase in Wegs throughout the world.

[Alysia]

again, my likes are for the replies. the lists are sad :crying:
I want to hug each one and one of you and to tell you how strong and kind souls you are after all :hug1: :wub:

[annekat]

Yes, the lists are sad, but thank heaven for this forum and our ability to share these things together instead of dealing with WG all by ourselves!

[lag713]

My grandmother had rheumatoid arthritis but I do not think I have any other autoimmune issues in my family.

I don't think I've had many occupational or environmental exposures. Approximately 3 years before my diagnosis, I worked for a two years in a research center that frequently had light flooding inside the building after it rained and the carpet would smell of mold. I had terrible mold growing inside my AC units in my last apartment. I was often sick with what seemed to be a cold with fevers, body aches, fatigue, and malaise in the spring of 2013. I developed joint pain before moving out in July 2013 but wasn't diagnosed until December 2013.

I was under a bit of stress because I am in graduate school and there is a lot of pressure to perform. I've lightened my load and reduced my stress over the last couple of months.

[annekat]

I don't remember hearing of any autoimmune issues in my family. My dad had, and some of my siblings and I have, deviated septums, one source of extra nasal and sinus problems. I think my dad may have had it worse than any of us but got through his life that way without treatments or surgery. At the end, he had so many problems with sinus discharge that in retrospect, I have to wonder if he could have had smoldering Wegs. Other issues took him out at age 83 before any WG dx would have been possible. Without a doubt, many people have had WG and died without a dx or even a thought of getting one.

On second thought, my grandmother had arthritis but I don't know if it was RA, and her daughter, my aunt, has RA.

[Jaypfei]

I think back to what my Drs. said the day they gave me the diagnosis. It was a random luck of genetics. I had a better chance of winning the lottery than being Dx'd with Wegs.
I can't honestly say what may have triggered the disease. Up until I got sick I had enjoyed good health and was physically in the best shape of my life. Then WHAM! I'm sick.
At the time leading up to my illness I wasn't overly stressed. My Father in-law had recently passed away, but I didn't feel emotionally stressed. Then I got sick. Flared in Oct 2012. My mom passed February 24, 2013 and one month later we lost my Mother in-law.
I've learned not to ask..."what else can happen?" I also don't spend a lot of time trying to figure out what caused the disease. It just seems counter productive to dwell on maybes and what ifs. Sometimes it's just as the doctors have said..a random luck of the draw, genetically speaking. Of course I wouldn't use the word luck. Maybe random misfortune. :(
No other AI's in the family. No exposures to harmful elements, that I'm aware of. Born, raised and married military, so we travelled a lot as I was growing up, but have lived in one place now for the past 27 yrs.
The only illnesses I had growing up we're ear infections and strep. Prior to Dx's the last ear infection was age 30. And when I was told ear infection at age 50......I knew darn well it wasn't.

[annekat]

The only illnesses I had growing up we're ear infections and strep. Prior to Dx's the last ear infection was age 30. And when I was told ear infection at age 50......I knew darn well it wasn't. Nice pic, jaypfei. The ear infection seems to be a common denominator for many of us. Maybe the fact that you had them was an early sign, or maybe not; we know many babies and children get them and don't get Wegs. I don't know that I had ever had one before the big one at age 58 that ended up being the first big event of my Wegs. I wonder if your ear infection at 30 might have been a precursor or indicator of smoldering Wegs. Doctors out there could become more accustomed to seeing a sudden, uncharacteristic ear infection, especially in middle age, as a red flag for possible Wegs, and diagnoses could be made earlier.

But here is so much conjecture to all of this, you are right, dwelling on it loses its point after awhile, as we will probably never know the answers. Thanks for sharing.

[Alysia]

I also had strep infections in my throat many years, repeatedly....

[Alysia]

and also mold in the house.... the mold is common in this thread....

[annekat]

I think mold is one of the most insidious things, since we often can't see it and have no idea where it might be lurking.

I don't think I ever had a strep infection. But I did have lots of bronchitis as a kid, got painful penicillin shots, and would be coughing in class at school for weeks.

[Ruotsi1]

No family hx of AI. Dysfunctional family, but not overly stressed. Earaches/severe headaches started 2 years before dx. No exposure that I know of. Was told just "bad luck." I knew there was more to the ear issues, but NEVER thought of (or heard of) Wegeners.

[Melly]

Genetics: Strong genetic pre-disposition. Maternal grandmother has Grave's Disease, maternal grandfather has psoriasis, maternal uncle has Type 1 Diabetes, my mother has psoriasis, my brother also has psoriasis and another brother (as well as myself) both have Raynaud's phenomenon, which might be autoimmune related.

Environment: I grew up very near to a chemical waste dump. And by very near, I mean 0.2 miles away (I just googled it). From what I remember, a bunch of barrels of hazardous chemicals were buried there, rusted out, and it majorly contaminated the surrounding soil and the groundwater. We ate a lot of veggies and fruits from that contaminated soil. WHY oh why would you garden there? I really don't know. I hate to bring it up with my parents, but I've wondered if this had anything to do with me developing WG. It's called the Chatham waste disposal site in Escondido, CA if anyone is interested in it. I think what finally triggered my first flare was being exposed to latex and finding out that I have an allergy to it. I don't know, I think it stimulated an immune response and kicked my system into "hyper-drive", because after that the symptoms that I had already been having for a couple of years started occurring more frequently.

Stress: I was working and going to college. I'd broken up with my boyfriend and still had to see him every day since we were dumb enough to take nearly all our classes together. This was in December, so right at the end of the semester. I started flaring during finals week. I think stress played a BIG part.

So there ya go! A complete trifecta of genetics, environment and stress. :P

[Wegetarian]

Had toncillitis twice last spring, then found out I had a brain tumor and later heard they wanted to operate it quickly. Guess that ticks both the health and stress check-boxes :D Oh yeah, I also started at a new job last spring so there is that too.. And was real worried about my 7 year old son in the summer as he was developing an eating disorder and started to lose weight while I was myself in pretty bad shape due to the operation and couldn't leave the house much.

The surgery wound was infected with Staph. Aureus, and I had some infection in my nose which might have been the same. There are some articles which say a Staph infection in the nose could trigger Wegs. So I taken like 5 times antibiotics by then (two for the tonsillitis and three for my nose before I got to the hospital where the antibiotics in the IV finally took care of the infections)

Anyway, doesn't really matter that much. I mean had someone sad there is one-in-a-million chance to get some weird disease after going to surgery then it wouldn't really had changed my mind. I guess if I got some better instructions for taking care of the wound it might not had become infected, but dunno. That's just speculation.

What is interesting and what I haven't read in any research papers is that a few women seem to get vasculitis after giving birth. Met one who got it after getting her first child, and I guess an author who wrote a book about vasculitis had that happen. Wonder if any of our members had that happen?

The rheumy who gave a lecture to us once about vasculites said that extreme physical activity (like running a marathon) can trigger a relapse. So was intererested if it can also start the vasculite, like for instance in those couple of cases where it started after giving birth.

[greenjeep]

This may seem really out there, but I recently re-watched a movie that says illness is caused by the influence of negative or worrying thoughts on our body.
We all know stress plays a role... I find the idea interesting.
It also said you could heal yourself with constant happy thoughts and picturing yourself as being perfectly healthy in your minds eye.


Sent from my iPhone while driving on the freeway.

[Dirty Don]

Nice idea GJ...then there are all the chemical structures, invasions of unwanted bacteria...yeah, sure, I can think those things right out of my mind...then again, I don't have much of a mind left...so now what do I do? Watch a movie? Sure...why not, goes well with pred when I'm bummed!! Sighs...still dreaming, aren't we!!

[jvilner]

@wegetarian- I know a few women who got sick with all kinds of autoimmune diseases after giving birth, mainly lupus. But that shouldn't stop one from bearing children! More problems start once you hit 50 and after menopause. Luck of the draw I guess. And I totally agree with the mind over body theory!! Keep positive! Karma baby!!


Sent from my iPhone using Tapatalk

[Alysia]

I think that it is the opposite: my wg, which was prob smoldering b4 my 3rd pregnancy, was on hold and during pregnancy and breast feeding (14 months !) I felt much better.
I think that pregnancy and breast feeding are calming the systems and making you less sick.

[greenjeep]

Check out this article I found on drudge today. It links depression to stress. Even mentions steroids and immunity disorders.


http://m.us.wsj.com/articles/SB10001424052702304734304579517953987157822?mg=ren o64-wsj



Sent from my iPhone while driving on the freeway.

[windchime]

Thought you all might find this interesting.

Infectious triggers for vasculitis : Current Opinion in Rheumatology (http://journals.lww.com/co-rheumatology/Abstract/publishahead/Infectious_triggers_for_vasculitis.99499.aspx)

[ingemlb]

Thought you all might find this interesting.

Infectious triggers for vasculitis : Current Opinion in Rheumatology (http://journals.lww.com/co-rheumatology/Abstract/publishahead/Infectious_triggers_for_vasculitis.99499.aspx)

We will find out in the future that microbes are behind most of our chronic diseases. Not single microbes but communities working together to either shut down our immune systems and hence allow them to create havoc in any part of the body, as the immune system is everywhere or somehow corrupt the immune system to go after the wrong things such as food (causing allergies) or our own bodies which is what happens in some of the autoimmune diseases.

The problem is how to get rid of these microbes. They don't respond to antibiotics, are not visible in microscopes and so far the only known way to destroy them is to re-activate the immune system to "see" them and go after them. That has to be done with GREAT CAUTION and can take MANY YEARS meaning it's an unpopular form of cure or treatment as you are guaranteed lots of pain episodes as the immune system does it's cleaning up and it is so very easy to over stimulate the immune system to start attacking you. I was on a treatment for 7 years which had some great results but in the end it didn't help with the Wegener's and in fact I may have made it worse by overstimulating my immune system :(

[LisaT]

There is a lot of hypothyroidism and anxiety in my family, both immediate and extended family. One or two people with serious mental illness but most just plagued by anxiety. I have been hypothyroid since age 12 when I had either Epstein Barr (mono), Hashimoto's thyroiditis or both... Lots of stress and a 'vulnerable' or sensitive personality that made it hard for me to withstand stress. Some AI disease (an aunt with sjogrwn's, mom has polymialgia rheumatic a, grandma had something similar to fibro or RA but no diagnosis...) but nobody with wegeners that I know of. I also had lots of strep throat as a kid and finally had my tonsils removed. Had lots of antibiotics.

My first AI disease, polymiositis, developed two years in to law school when I was definitely stressed... After it was in remission I had just my usual pain and fatigue that doctors attributed to fibromyalgia. Things started to snowball with becoming a new parent and refusing to sleep train my daughter and then my son... Many years of not enough sleep and I found life as a new parent with no family in town stressful. vague AI symptoms smouldered for a few years before the diagnosis of RA.

There do seem to be a few common threads here. Lots of us seem to have had more than our share of other illnesses in the years before wegeners.

I don't know of any particular environmental toxins I would have been exposed to but I'm sure we all were to some. We lived in the cabin my parents were building during summers as they built it around us (think open walls with exposed pink insulation)--best memories of my life but maybe there were some toxic substances there. That's all I can think of for now.

[Alysia]

we are collecting info.... thanks everyone.... maybe we will have some picture...:unsure:

[lag713]

Edit/addition to my family info:

My doc seems to think that allergies are closely related to vasculitis. I think that makes sense considering it is an autoimmune illness. I have seasonal allergies and possibly indoor allergies. My mother has indoor and seasonal allergies, mainly dust mites. My brother has seasonal allergies and has recently started breaking out in a terrible rash. He's studying in Sydney right now but is a US citizen so he has had some difficulty in seeing specialists. He's been on many different ointments but nothing has worked. We're starting to think it may be autoimmune. He will be seeing an immunologist soon. I know Wegener's can cause rashes. I hope it isn't so serious but only time will tell.

[ingemlb]

I have come across this in research that allergies are definitely autoimmune disease. It's the body treaty the food we eat as pathogens and tries to go after them making us sick in the process :( Bit like the other Autoimmune diseases where the body attacks it's own tissues. The immune system sends destroyer cells along that consume the supposed pathogens then self destruct. Thus they put toxic waste into the blood stream and on top of the damage make us rather ill trying to eliminate the waste. Very simplistic description of how the immune system works :) I sure hope for your sake Lag that it's not Wegener's. Hope you get some answers and results.

[lag713]

Thanks, Inge. My brother and I joked that because he had one of his kidneys removed shortly after birth (there was a congenital defect) and I have Wegener's that we will end up needing to go on dialysis together in our old age. Somehow the dark humor always makes us laugh. :rolleyes1:

Whatever he has, he will get treatment and it will be okay. At least it is only a rash for now! (Is that pessimistic or optimistic? I can never tell...)

[annekat]

Edit/addition to my family info:

My doc seems to think that allergies are closely related to vasculitis. I think that makes sense considering it is an autoimmune illness. I have seasonal allergies and possibly indoor allergies. My mother has indoor and seasonal allergies, mainly dust mites. My brother has seasonal allergies and has recently started breaking out in a terrible rash. He's studying in Sydney right now but is a US citizen so he has had some difficulty in seeing specialists. He's been on many different ointments but nothing has worked. We're starting to think it may be autoimmune. He will be seeing an immunologist soon. I know Wegener's can cause rashes. I hope it isn't so serious but only time will tell.I like the way your doctor thinks. Why wouldn't they be related? Why couldn't allergies trigger Wegs? Before WG dx, I was tested and found very allergic to many pollens and molds, and less severely to dust mites, animal dander, and feathers. I got allergy shots for about a year and a half and quit them when I got my WG dx and started treatment. Since then, I have a running argument with the doc treating me for WG, a pulmonologist, about allergies; whenever I complain of allergy symptoms, which is usually starting in the early spring and continuing now with the grass pollen, he pretty much scoffs, saying with all the immunosuppressants and pred I'm on, I couldn't be having allergy symptoms. I don't believe him and my ENT also feels I can still have allergy symptoms, so he is from whom I get any prescriptions or advice on OTC meds for allergies. I think he felt OK about me quitting the shots, but still feels the allergies need addressing. I even think the seasonal allergies are implicated in the blocked ears and vertigo that I've had this year. That doesn't really speak to whether they are related to WG, or just similar in some ways, but I'd certainly tend to believe any doc who says they are related, as it makes sense to me.

[lag713]

Every doc has their own perspective but your pulm may be wrong this time. My rheumatologist, pulmonologist, and ENT agree that I have allergies. In fact, I've thought that some sinus symptoms were wegs related and they thought it was allergy related. My pulm just diagnosed me with asthma and prescribed meds that will help with both asthma and allergies (singulair - oral med for allergies and asthma; nasonex - nasal spray for allergies; & zyrtec - for indoor and seasonal allergies). I also have a deviated septum so my airflow through my nose has been pretty bad. I'm hoping this will let me breathe easier, both literally and metaphorically.

[annekat]

I think my pulm, who treats my WG due to lack of anyone else to do it, is just a stubborn jerk. He sees so little of me and I'm the one who's here in my body 24/7 and I think I can tell the diff between WG stuff and allergies after all the time I've had to observe both. So he'd rather let me suffer with the allergies than admit that he could possibly be wrong. He is not an allergist, an immunologist, or a WG specialist. Thanks for the backup on what I already thought was true.

[BookNut]

I am amazed at how much pain and suffering has been recounted here...but, as always, so impressed with how you all continue forward with grace, hope and humor. So glad that you all have this forum to support each other...and even have time for my little complaints. God bless all of you!

[annekat]

I am amazed at how much pain and suffering has been recounted here...but, as always, so impressed with how you all continue forward with grace, hope and humor. So glad that you all have this forum to support each other...and even have time for my little complaints. God bless all of you! You, too, Jacquie! Wouldn't it be interesting if you turned out to be a Weggie after all? I doubt it, and hope not, but in any case, you are still one of us here on the forum! You have a lot to contribute, and have been doing so. We love you!

[Alysia]

I am amazed at how much pain and suffering has been recounted here...but, as always, so impressed with how you all continue forward with grace, hope and humor. So glad that you all have this forum to support each other...and even have time for my little complaints. God bless all of you!

out weggie family is the best :love:

[BookNut]

Thank you so much Anne! Hopefully I can contribute a little something. If only the whole world could get to know each other and their struggles. We would have so much more empathy. I love you and all my friends here on the forum! Thanks for being there!

[LisaT]

The forum wouldn't be the same without you, Jacquie, Wegs or no.

on the topic of ethology: I've been skipping bactrim the last little while because it's a horse pill and i was choking on it and just hadn't gotten around to figuring out a solution. I notice my nose and throat acting up again. Now that I've gotten smaller pills and will go back on it, I'll see if it improves. This reminded me that long before the diagnosis or suggestion of GPA/WG, an ENT found staph infection in my nose and I remember reading something but can't remember where, that the disease is 'associated' with or possibly caused by infection. I'm leaning towards at least my nose and throat troubles being related to infection. Maybe the immune system's reaction to the infection starts other systems and organs going haywire. Just a thought. It wouldn't make sense for those whose noses and throats aren't involved but maybe the disease has more than one cause. And those do seem to be the most common symptoms.

[BookNut]

Thanks Lisa! At the beginning of my respiratory/sinus troubles I googled my symptoms - and an amazing number of ailments have sinus infections as one of the symptoms. I too was given Bactrim for the staph infection that was discovered by my ENT. I turned out to be allergic to it. Though I think it was actually the red dye in it - not the medicinal part of it.

At any rate.....at the suggestion of my primary care doc along with the approval of my plumy and ENT, I am not taking 500 mg of Clarithromycin three times a week. It is a macrolide antibiotic. There are several more in that class. They work a bit differently, in that they are meant to prevent the growth of bacteria. There have been some inconclusive research projects that seem to indicate a reduction in flares for people with COPD and chronic sinusitis. It is a long term treatment, I believe that you change to a different macrolide antibiotic every three months. Don't know how long that continues. So far I have noticed that I am not blowing my nose nearly as frequently. However - it is doing nothing for my asthma, and I had to start prednisone yet again. I think this is the 7th taper in 10 months. Although I think I could have managed a bit longer, but I want to be navigating to help my daughter who is due to deliver her first child any day now. I used to have to take the prednisone mostly for the nasal issues and wheezing. However, now the trouble has escalated to debilitating shortness of breath.

Fortunately, I have another plan. I am going to call my insurance company tomorrow and get clearance to see Dr. Daniel Culver at the Cleveland Clinic. I so hope he can give me an appointment. He was recommended when I asked a question about CC on this forum. Yay forum friends!! He is a pulmonologist, which I think is the best place to start, since the most life-changing symptoms are in my lungs. As soon as my daughter calls - we will be off to Ohio where she lives. So going to the clinic will be convenient because we will be there anyway.

So - maybe the macrolide antibiotic is something for you and your doctors to think about.