Close to home

[Tom]

before cousin who passed away this past summer due to diabeties complications out of the blue asked me if it was Wegeners granulomtosis that I was taken aback that she had info on it. It seems her first husband who died when I was about 14 had Wegs. She said he had Wegs and it had got to his lungs and I knew he had work done on his vocal chords because he was hoarse the last several months of his life. I never knew that about him and wegs til recently. He wa an alcoholic and the Doc wanted to treat him for COPD but he refused and his last months were bad as I recall ,he was constantly sick and I thought it was just the alcohol. This was about 1971.

Second close to home. I ran into another cousin and his wife while shopping. I rarely see this part of my family and his wife asked how long Id been on oxygen, She is a nurse by the way. I told her what was going on with my health and as soon as I said WG, she told me that she just lost her dad 2 months earlier from a lung infection. Seems he had what they told him was pneumonia and was told that he would be admitted. Three days later he died. Dr's were baffled by the sudden loss and asked to do an autopsy. What they found was that her dad had WEGENERS and didnt know it but she said he had been fighting sinus infections and lots of colds the last year or so. He was 75. It just make one wonder how many wegs patients are out there undiognosed. I was told early in my Dx that the insurance companies didnt want to pay for testing until all other possibilities could be eliminated because you could get false results from lab test. Or unless you showed classic signs of WG as I did with the purprura. Looks to me like they would consider doing a series of test and save money in the long run. I was also told that because there are so few cases that it did not warrant the insurance companies paying for the test.

[Pete]

Close to home for my daughter-in-law: Her Dad's brother and I both have wegs. Hope the grandkids never have to deal with it...

[Tom]

Close to home for my daughter-in-law: Her Dad's brother and I both have wegs. Hope the grandkids never have to deal with it...
Wow, thats sort of the point I was making about more of us out there than they know. If the stat is 1 in 30,000 have wegs and you can actually find it in your sons inlaws and I found it just with in my family even though there is blood connection kind of tells me that there is more of it out there.

[pberggren1]

This is interesting. From what I have found Wegs is about 1 in 5,000. I know 2 other Weggies right in my town.

[ArlaMo]

I live in a smallish town (40,000) and have learned of two other Weggies in the past month (both recently diagnosed.)

[annekat]

Seems like there is enough of it going around that doctors should know to look for it and test for it on a routine basis. I agree, Tom, there must have been many undiagnosed for a long time. It seems there is less and less excuse for that.

[carriej22]

My doc told me 10 in 1,000,000 or 1 in 100,000 globally. However the disease is more common in certain areas. He seems to believe there is a cause as he said he has witnessed for himself they appear in clusters.

I just recently learned I lost an uncle from HS Papura (spelling) when I was 4. They say all these autoimmune diseases aren't related/hereditary but I think that's for the birds!

[annekat]

My doc told me 10 in 1,000,000 or 1 in 100,000 globally. However the disease is more common in certain areas. He seems to believe there is a cause as he said he has witnessed for himself they appear in clusters.

I just recently learned I lost an uncle from HS Papura (spelling) when I was 4. They say all these autoimmune diseases aren't related/hereditary but I think that's for the birds! I've always heard 1 in 30,000. Here in my area, that sounds about right, from what little I know about other Weggies in my general community of several small towns clustered together.

Maybe they say it isn't hereditary, but I'll bet there are genetic predispositions. My whole family has sinus problems, deviated septums, etc. Could make them all susceptible to infections that could trigger Wegs. And there has been some chemical sensitivity in my family, allergies, stuff like that, that also sounds like things that could lead to conditions that could trigger Wegs. Since they don't know for sure what the full range of things are that could trigger it.

[Pete]

Hi Anne,

It seems like much of the research on GPA is aimed at validating the genetic disposition and hereditary hypotheses. At any rate, I hope a cause is found, and that such discovery will lead to better diagnostics and treatments. Until they do, I guess I'll keep on keeping on.

[Tom]

The 1 in 30,000 is the stat I get from reading. My drs just agree that its rare. The best explanation of the causes of it are surgeries or injuries or maybe viral or bacterial infections. That about covers all the bases, LOL. My rheumy gives me the impression that science has been chasing the answer forever. Eveytime thye thought they might have it pinned down, the theories are shot down. I wondered if it was something that could lie dormant. I had a foreman on my job that had a boy born the same day at the same hospital in 1956. His wife could have been my moms room mate in those days they doubled in rooms. There was a total of 4 boys born at tht time and 2 of those 4 boys died from what the foreman was told was a virus. His son was one that was lost. My Dr says it wont lie dormantlike that. He and his wife took to me only for the connection all those years later. I asked about weed killer I spread thu the years on my job or the rock dust I was always in. I worked in the railroad industry and rail cars would go bay leaking who know what and cleaning up deraliments, who knew what was in some of those over turned rail cars. Those idea dont wash either because there were a couple thousand over the years I worked and then those who came before me, They suffered no Wegeners dx that I know of or if it would have been dx'd. I tend to think that it is a gene either missing or defective that causes it but Im no scientist. Its like my first pulmo said, "I will be on the lookout for wegeners in her patients for the next 5 years and never see it , but now she will always look for the rest of her career"! I think that if there is more dx' that more awareness of the disease will bring it closer to a cause and maybe a cure. It just seems like only those of us afflictied or have family or a friend with it that it is virtually an unknown disease. I know with all my being that if I hadnt gotten the purpura, I would have died within a few weeks of my breathing troubles because they were treating me for COPD and it had already took my lungs and was into my kidneys and now the cardio beleives it has weakened the left ventrical on my heart and I take medication to help that.All the damage the wegs has done to my body was done with in a 4 month period and with the purpura and it had already damaged the lungs and within a 2 week period damaged the kidneys. I guess it foes back to the point that there should be priority given to testing for wegs if symptoms like ours exist. Its simply awarness by the medical drs.

[annekat]

It's indeed sobering to thing how many of us might not have been dxed in time to save us if we hadn't gotten a certain specific symptom If Wegs hadn't eventually gone into my lungs, and a certain smart internist hadn't correctly guessed an interpretation of the CT scan, and if around the same time, my saddle nose hadn't developed to the point where I'd notice it under my glasses, and if I hadn't already found out on the internet what a saddle nose was, well, then......... who knows how much longer it would have taken for me to get dx'ed. I'm sure there are other more outstanding examples.

In addition to the hereditary/genetic theory, I also buy the theory of exposure to chemicals or other harmful substances. I know I've read on here from forum members about concentrations of Wegs patients in certain geographical areas where certain industries take place, and among people who work in certain types of factories.

[pberggren1]

There is a town in Montana that has 17 Weggies.

[annekat]

There is a town in Montana that has 17 Weggies. Wow. I wonder what goes on in that town to make so many people get dx'ed with WG? I wonder where they go for care, since there probably aren't any WG specialists in that area? Salt Lake City, maybe.

[pberggren1]

I think it is a mining town so the thought is that the dust from the mine might have triggered it. I have no idea where they would go for care but I would think that a local doc would have taken them all on and would just consult with docs at Mayo prob.

[annekat]

I think it is a mining town so the thought is that the dust from the mine might have triggered it. I have no idea where they would go for care but I would think that a local doc would have taken them all on and would just consult with docs at Mayo prob. The mining thing fits with things I've heard on here and elsewhere. There was someone in S. Wales who said a lot of people in a certain area there had it, and I don't remember if there were mines or lime kilns or something like that mentioned in connection with it. I wonder how many miners with black lung disease or any of those classic miner's problems might also have had Wegener's but were never dx'ed.

[Tom]

I can see the mining connection also. As a railroader, I dumped lots of ballast, Im talking miles and miles at 5 or more miles a day all thru the mid 1970's. thru the90's The granite dust at times would choke and I would have to step out ot the dust to catch my breath. In the early years,no mask or other precautions were given or offered. As ayounger adult we went head long into the job. I also remember spreading weed killer on theright of way with what I call a organ grinder like the little monkees yiu see on old movies panhandling. We took turns cranking that thing and the helper would fill it with the weed killer as it was hanging on yiur chest and astrap around your neck. All the time we might hae a cigarette while cranking or filling the bag. That was years ago and the mining part is where my thoughts were when I first started learning about wegeners. But why hasnt any of my co workers been dx'd? Or maybe they are just a time bomb!

[Randy]

My rheumy believes in the genetic disposition with something else triggering the disease theroy. I have a cousin with a son who has Lupis and my grandfather died in the 1930's of something that sounds a lot like vasculitis. No one had a clue back then, especially in rural Canada. We can't figure the "something to trigger it part" though. I grew up on a farm but have worked all my life in stores, offices and sales where I wouldn't be exposed to dust and other things that might cause WG to take off. It could be something as simple as a fungus or something from working in the garden.

[annekat]

My rheumy believes in the genetic disposition with something else triggering the disease theroy. I have a cousin with a son who has Lupis and my grandfather died in the 1930's of something that sounds a lot like vasculitis. No one had a clue back then, especially in rural Canada. We can't figure the "something to trigger it part" though. I grew up on a farm but have worked all my life in stores, offices and sales where I wouldn't be exposed to dust and other things that might cause WG to take off. It could be something as simple as a fungus or something from working in the garden. The way your rheumy looks at it sounds very reasonable to me. I suppose working in offices and stores you could have been exposed to something in the ventilation ducts or whatnot.

[Tom]

The way your rheumy looks at it sounds very reasonable to me. I suppose working in offices and stores you could have been exposed to something in the ventilation ducts or whatnot. It makes one wonder about the genetics of this disease. The info I got is that genetics have been looked at but there is nothing that points to it as being hereditary. My grandmother died in 1953, at age 53. That is the age I was when diognosed with the wegs. I have here death certificate here. I aquired it after dad died. It says cause of death, some sort of renal failure. I have to wonder if she had wegs. Diabeties is rampid in my family and just assumed that she died from complications of Diabeties but at that time it might be that they didnt know the effects of diabeties, nor were they aware of Wegeners, much less the effect it has on the kidneys! I truely do believe that there may be more people afflicted with wegs than known. I did tell my nephro about my Grandmother but thats a far as it went.

[annekat]

I wonder how many people throughout history, even since the caveman days, have died of Wegener's and of course never had a clue about it. We are very fortunate for the medical advances that allow many or most of us to live fairly normal lives and to expect the possibility of a reasonable lifespan. It sure helps to know what one has.

[Randy]

That's true, look how long it took them to figure out that asbestos and smoking were dangerous.

[watersedge]

I've been reading a lot the past few weeks about silica exposure and wegeners and trying to find some sort of link or understanding into how my dad picked up wegeners. He was a docker all his life and I had read about coal miners, sandblasters, farmers and other types of occupations being exposed to it. Grain dust is a form of exposure which I was suprised by and my mam told me he worked a lot of boats like that and also coal boats and potash boats. My mam remembers daddy saying that he and other men sometimes had nose bleeds from inhaling the dust. A lot of the men that my dad worked with died quite young, in their mid fifties including my dad. A lot of them had breathing and copd conditions and wonder if any of these men had wegeners like my dad that went undetected considering that they all endured long term exposure to silica.
Here is an article I read lately if anyone would like to read it, hope the link works.
Silica Exposure in Anti-Neutrophil Cytoplasmic Autoantibody-Associated Glomerulonephritis and Lupus Nephritis (http://jasn.asnjournals.org/content/12/1/134.full)

[watersedge]

Here is another link,

http://www.bluewaternavy.org/illness/sarcoidosis/ehp.nihsilica_autoimmune.pdf

[annekat]

Those are interesting links, watersedge, and thanks for sharing them. I am a potter and have accepted the fact that exposure to silica dust could be a trigger for my Wegener's. I can't stop the work right now, I need the income, but can be more careful in how I protect myself when doing certain parts of the process. Also keeping my studio clean is of the utmost importance, and while cleaning it, I must wear proper respiratory protection. I admit I'm not as diligent as I should be on some of these things, so your posts are a good reminder.

I do not make pottery all day every day and I'm sure I'm not exposed to as much silica dust as the people you mention, the miners, farmers, and other industrial workers such as your dad and the men he worked with. I hate to think of all the people who have died of Wegeners without ever knowing what it was they had or what activities they engaged in that may have caused it. And of course their employers would have had no clue either that they might be killing their employees due to unsafe practices.

I'm sorry you lost your dad, and am glad to see you still contributing to the forum.

[watersedge]

Thank you Annekat, I used to be on the forum quite a bit but just pop in now and again lately. I know you probably have all read similar articles before but sure there is no harm in posting them again. On the subject of close to home, a neighbour of my parents who only lives a stones throw away has had wegeners since he was 16.
What a nice job you have, I'm sure you are very creative.
My dad is gone nearly 2 years now on the 28th of March, something I find quite hard to accept. To say that time is a healer is not the case, everyday that passes drags me further away from the last time I saw him alive. Somewhere inside I think he is still alive and if I go down to the hospital he will still be there in the same bed waiting for me to bring him home. My heart is broken over him, just to see him again I would give anything. I often think that this would all be so much easier if he had not have been such a sincere, protective, loving, caring dad.

[annekat]

Thank you Annekat, I used to be on the forum quite a bit but just pop in now and again lately. I know you probably have all read similar articles before but sure there is no harm in posting them again. On the subject of close to home, a neighbour of my parents who only lives a stones throw away has had wegeners since he was 16.
What a nice job you have, I'm sure you are very creative.
My dad is gone nearly 2 years now on the 28th of March, something I find quite hard to accept. To say that time is a healer is not the case, everyday that passes drags me further away from the last time I saw him alive. Somewhere inside I think he is still alive and if I go down to the hospital he will still be there in the same bed waiting for me to bring him home. My heart is broken over him, just to see him again I would give anything. I often think that this would all be so much easier if he had not have been such a sincere, protective, loving, caring dad. Watersedge, I had only read about the possible silica dust connection from time to time on this forum. I hadn't read the exact articles you shared and there is absolutely no harm in posting things we've read before.... there are many new people on here who may not be aware of these things. And since they say there's "no cure", and no definitive known cause, we are still sort of in the dark and need to hear of anything that might make some sense.

Coincidentally, I lost my dad on March 12, 2011, just a few weeks before my WG diagnosis, when I was quite sick and couldn't go see him in his final days. He did not die of WG. He was 83 years old and lived a normal lifespan. But it was especially hard to take under the circumstances. It has even taken me awhile for it to hit me and for me to fully grieve. I'm still going through the process. My dad was as caring as yours, I'm sure, and sometimes a very fun guy to be around, but in general, a fairly inward person and more the "distant father" type than yours sounds like. Which makes some of the feelings a little more buried and hard to assimilate into the grieving process. I'm glad you had such a wonderful father and it's really a shame that he died so young from this rotten disease. It's very understandable that you are having trouble accepting it.

[watersedge]

Annekat, I am so sorry that you lost your dad too, I know that your dad was 83 and mine 59 but it does not matter what age they leave us at, it does not make it any easier. I am a parent of 3 young children who keep me going and make life worth living for but even though I am a grown up and have responsibilities, when I was around my dad I still felt like a child at heart, it is nice to have somebody who fusses over you and who makes you feel so loved, that is what I miss, just his presence.
Are they your own creation, the bowls in your picture, they are very nice. I love gardening myself, can't wait to get back out in it after the long winter, I can see all the new growth coming through the soil and the stretch in the evenings is great.

[annekat]

Well, I guess most of us do lose our dads. It's hard when things go unexpressed for years and then they are gone and it's too late.

Yes, that is my pottery, my stack of bowls. They do not look as good in the picture as I hoped they would. But I'll find other pics to post there. As for gardening.... yes! Green things are coming up here, too. I'm working a seasonal job for a lily bulb farm, and have many of their lilies growing in my yard. Will post pics of those, too.

[Sangye]

(Nice to see you, WatersEdge :smile1:)

Silica exposure is one of the only proven causes of Wegs. (Though it's obviously not the only cause, since most of us haven't been exposed)

I asked Dr Seo once what he thought of the genetic link. He said Wegs occurs in AI families in the same proportion as in non-AI families, so there doesn't seem to be a genetic link. We've had this discussion many times in this group. His statement has always been borne out by our responses-- for every Weggie who has AI diseases in their families there is at least one Weggie who doesn't. I'm a doesn't. :biggrin1:

[watersedge]

Hi Sangye,
How are things? Hope all is well with you.
Silica exposure is about all I could find too as one of the more proven causes as well as reading a lot on stapplococcus aures bacteria (my attempt at spelling lol). I sure do hope that someday they find a way of curing it. A lot of the reading on research can sometimes get a bit heavy and bogged down in medical terminology and hard to understand.
Take care

[Michael Bell]

Hi all, I do not think there is a genetic link as I am the only Wegie in a very large extended family but the silica link is interesting as I have had a high exposure as a bricklayer for over twenty years, five of these in a steel works. I hope one day they can pinpoint a source and find that oh so elusive cure.
My best wishes and prayers to you all.
Mike.

[annekat]

I make pottery, as you read earlier in the thread, so there's the silica link again. Of course most potters don't get Wegs and I'll never know if that's what triggered it.

As for the genetic link, there could be an inherited pre-disposition or susceptibility, but that wouldn't mean all Weggies would have another one in their family. My younger sister has a lot of sinus stuff and some tinnitus and ear congestion, which are some of the things I had way before knowing about Wegs. That doesn't mean she will get Wegs, but it makes one wonder. I think we all have deviated septums in my family, as do a lot of people, which are a common cause of some of these issues. My dad had that, too, and struggled with excess mucus until his dying day. Perhaps people with existing sinus issues are more susceptible, who knows. But there is obviously a heck of a lot more to it than that, and I share your optimism that "they" will make progress on not only finding the causes but a cure.

I just realized this is a thread I already contributed to, so excuse me if I repeat myself. And welcome to the forum, since I don't remember welcoming you before. You have found the best place online for a Weggie to hang out.

[drz]

I make pottery, as you read earlier in the thread, so there's the silica link again. Of course most potters don't get Wegs and I'll never know if that's what triggered it.

As for the genetic link, there could be an inherited pre-disposition or susceptibility, but that wouldn't mean all Weggies would have another one in their family. My younger sister has a lot of sinus stuff and some tinnitus and ear congestion, which are some of the things I had way before knowing about Wegs. That doesn't mean she will get Wegs, but it makes one wonder. I think we all have deviated septums in my family, as do a lot of people, which are a common cause of some of these issues. My dad had that, too, and struggled with excess mucus until his dying day. Perhaps people with existing sinus issues are more susceptible, who knows. But there is obviously a heck of a lot more to it than that, and I share your optimism that "they" will make progress on not only finding the causes but a cure.

I just realized this is a thread I already contributed to, so excuse me if I repeat myself. And welcome to the forum, since I don't remember welcoming you before. You have found the best place online for a Weggie to hang out.

My Mayo expert told me once that my history of ear infections and sinus problems and allergies probably contributed to my getting Wegs. A insect bite (maybe a spider bite) which was treated as a probable tick bit and Lymes disease might have been the precipitating factor. The pain in joints started shortly afterward but the nasal crusting and bleeding had been present for months before.

[annekat]

My Mayo expert told me once that my history of ear infections and sinus problems and allergies probably contributed to my getting Wegs. A insect bite (maybe a spider bite) which was treated as a probable tick bit and Lymes disease might have been the precipitating factor. The pain in joints started shortly afterward but the nasal crusting and bleeding had been present for months before.I never had ear infections or very many sinus problems until the big ear ear infection that was probably the start of my Wegs. After that, lots of sinus and ear problems leading up to eventual diagnosis when lung involvement set in. But I did have a history of allergies to pollens and such, and my main symptom was asthma. Eventually I had some tinnitus and congested ears like my sister is describing, but it went away for a couple of years before the big ear infection. Weird stuff. I wonder, since allergies are also an immune system disorder, what role they might play in a tendency to get Wegs, as your doc suggested, drz. Of course, most people with allergies don't get Wegs, but it makes sense to me that they could sort of set one up for it, and as you imply, the Wegs dog just waits for a trigger to jump into action. i often wonder if inhaling incense at a funeral, which I wasn't used to and made me cough a lot, had anything to do with the severe ear infection two weeks later, which turned out to be Wegs.

[mishb]

My 24 year old daughter was tested for WG and RA (amongst others) last week and we got the results today.

Here are her symptoms - tonsillitis or throat infections since a baby, last three months she has had nose bleeds and nose pain daily (mainly when sitting up from waking), nasal crusts that don't want to budge and a sinus rinse doesn't help much, ankle pains since early teens, knee pains and hand and finger pains for last three months.

If someone came on here with these symptoms, we would all probably say......it's sounds a little like WG.

My GP was very good, and even after I told her that I was probably being paranoid and that it certainly sounds like the symptoms I started with (except I also had ears and eyes), she said that she understood and I'm not being paranoid, because there could be something in her DNA.

Diagnosis - Not WG or RA - everything was clear there. Not Thyroid. No ANCA or ANA. High WBC and just above average CRP, very low Iron, Zinc and Vit D

She now needs another blood test for a full iron count and also needs a sinus scan to see what is going on there.......and then a referral to my ENT


So very interesting, thankfully no WG, but interesting that the doctor said that it could be possible for it to be in her DNA.

Remember though, I was her first WG patient and she never really knew about it until I was diagnosed.........after all of her mucking around. So the stuff about DNA could be taken with a grain of salt. (At least she is now on the ball)

If it is environmental, then it could be possible for my daughter to have it (which she doesn't) but we live in the same place, work in the same place, catch the same public transport etc........so the exact same environment. We were also involved in the same 'potentially serious' car accident in which the stress from (I feel) is the main factor for my WG showing itself.

I guess, if it is going to hit, it is going to hit. This WG dog is not fussy on who he attaches himself too.
Doesn't care what Country you are from, what colour of your skin or what native tongue you speak, what age you are or whether you are male or female......he doesn't care, so why would he care if he already attacked you mother or father or brother etc........it's just one more for him to take down.....anything is possible

[Alysia]

Dear Michelle,
thanks God your daughter doesnt have WG.
from what I read WG is NOT genetic.
you had hard time waiting for the results... :hug2:
are there any meds that helps her ?
I hope she will soon feel better.

[mishb]

Thanks Alysia.

No meds at the moment. The medicated nasal sprays can cause dryness and also bleeding and since her nose is already bleeding, we decided to stay away from any sprays at the moment, except the sinus rinse/wash.
I think it is more likely that it is the low D levels which are causing the pains, so she can start on taking the vitamin D's and as for the nose, they are checking for polyps and deviated septum.
She is just happy and I bet she is even feeling a bit better now that it is not WG.......as we all are.

[annekat]

I am reaching the same conclusion, Michelle..... ANYONE can get Wegs, though not many do, that we know of..... I'm glad your daughter is in the clear on that score.

[mishb]

Thanks Anne,
Now to find out what her problem is.......I just hope it doesn't take 18 months like it did for me :sad: and/or most of us on here.

[Alysia]

No meds at the moment.

I would have tried antibiotics. if it helps - good. if not - it is another detail for reaching diagnosis. as far as I know, sulfa may help.

[mishb]

Thanks Alysia,

My daughter only ever has a couple of months off antibiotics each year because of her continued tonsillitis........they don't help her.
It's best to stay clear of them as much a possible - I think she has already built up a resistance to them.

She's gone this long, she can wait another week or so.