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Thread: Possible cause of Wegeners?

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    Default Possible cause of Wegeners?

    Hi, I was diagnosed with Wegeners in January 2011 aged 58 and have been on remission for the past six months and finally off steriods but still on azathioprine.
    I am aware that according to medics there is no proof of what causes Wegeners but I have suspicions of my own as to a possible link to what could cause Wegeners.
    My suspicion is contaminated water.
    Let me explain my reasons to link this to Wegeners!
    I understand that most houses built pre 1960 in Scotland had lead pipes for the water supply and before I moved to my present house 15 years ago my two previous houses had lead water pipes. So for 43 years I believe I have been drinking lead contaminated water.
    What brought this to my attention is I met up with my old neighbour who lived next to me for 40 years and guess what he was diagnosed with three years ago? Yes Wegeners Granulomatosis!
    Is that a coincidence or what?
    Not as far as I'm concerned I'm afraid.
    My consultant informed me Wegeners affects 1 in 30,000!
    So for two people living next to each other for 40 years and drinking the same water supply to be diagnosed is beyond coincidence I think!
    I would be interested in any thoughts on this subject!

    Cheers
    Chas

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    Chas,

    My Mom and Dad's family came over from Scotland to the US
    . I was diagnosed at 59-60 years old, the docs do think I have had it a very long time. A Dr. in the USA claims Scottish people have higher than normal number's of AI diseases. 1 in 30,000 is high or is it in our genes, from the way our people ate before us?

    Mary
    Last edited by jakekell; 01-08-2015 at 11:54 AM. Reason: error

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    I have wegeners. Dxed 10 years before my next door neighbor and best friend who was dxed with perifial nerve vasculites. Did alot of the same treatments. We joke it was the pond we grew up swimming in every day in the summer. She is 2 days older than me.????

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    Chas, I'm the same age as you and was dx'ed just a couple months after you. I'd had it for 2.5 years in my sinuses but wasn't dx'd until it went into my lungs. I think I'm now pretty much in a medicated remission, though no one has said so, and am still on pred, MTX, and Bactrim (the sulfa antibiotic which can go by different names.)

    Many possible causes or triggers for WG have been hypothesized, including too much exposure to harmful substances. So although it may not be the only cause of WG, it seems perfectly plausible to me that both you and your neighbor could have gotten it from exposure for many years to lead in your drinking water.
    Anne, dx'ed April 2011

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    I have a theory that it might be a morphed version of syphilis.
    Syphilis can cause saddle nose deformity.
    With all the stealth viruses and foreign proteins in vaccines pumped into our blood stream and all the genetically engineered foods changing our dna especially in the gut, there is probably now real way to figure out what causes what.
    Heavy metals could help trigger misfolded proteins or changes in the pathogenic toxin expressions, but we may never know.
    I believe it is extremely important to eat clean, unadulterated foods and repopulate our gut with good bacteria.
    Our gut is 80% of our immune system and effects our brain function.

    I don't know if it is just my new knowledge of vasculitis, but it sure seems like it is becoming more prevalent.
    I would like to see the progression over the years on the prevalence of vasculitis.

    Chronic lead poisoning can cause extreme aggressive behavior and this is opposite of what I see in the vasculitis community. I find people with vasculitis to be very compassionate.
    Last edited by mrtmeo; 01-08-2015 at 01:55 PM.

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    I am nearly the same start as annekat! Sinus, then lungs and kidneys! I do believe that the disease is environmental. I was 27 years working railroad maintenance. Who knows what that stuff is leaking out of some rail cars. Also I had a pretty serious cancer surgery, "Radical surgery" as my oncologist put it and I read that there is some train of thought that it can begin from a virus or bacteria that are hospital born during major surgery!
    Ive had a back injury that caused some bleeding on my spinal cord.
    What most recently stood out for me was that I read an article that said that AI diseases have been linked to a lack of proper rest! After my back injury, I spent many nights awake and throughout the following day because I couldn't sleep for the pain in my back, I had broke it by the way!
    That was in 2000 and my troubles began in 2006 with cancer and then the sinus and breathing issues between 2008 and 2009 and then all hell broke loose it seems.
    I did however, grow up poosr and my early life we lived in sub par homes that the folks rented and who knows what the well held or the out house germs etc. But Im the one that has it and all those around me who lived/worked in the like conditions have no wegs that I know of but have the usual arthritis that comes with age!

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    Sorry, Blake, but I find the theory of WG being a "morphed form of syphilis" to be pretty far fetched. Syphilis is a bacterial infection and vasculitis is not. It's been theorized often that an abnormal autoimmune response such as WG can be triggered by a bacterial infection. So, possibly having an infection such as syphilis could trigger WG or other vasculitis. That doesn't mean they are the same thing. As for saddle nose, it appears to be caused by a cutoff of blood and oxygen to the area. This occurs in cocaine addicts, WG sufferers, and in the old days before any syphilis treatments were available, in advanced stages of syphilis, according to the brief research I just did. It said that advanced syphilis would cause damage to the blood vessels and tumors in the facial area. WG causes cutoff of blood flow through the formation of granulomas. There could be other conditions or mechanisms that would cut off blood flow in that area and cause saddle nose, as well.

    Vasculitis may be more prevalent or may just seem so because awareness and diagnosis of it are improving. I imagine many have gone undiagnosed in the past and could easily have died as a result before anyone knew what they had. But you could also be right that the incidence is rising due to environmental toxins and unhealthful diets. Which doesn't mean that most of us on here have a bad diet, etc., necessarily. Most of us don't get vasculitis even if our diets are not the best. It seems to be up to chance, a lot, and possibly triggered by things we've mentioned.

    I don't think Chas said he had chronic lead poisoning, though I don't know that he didn't. But he doesn't seem very aggressive, so far, and I have no reason to think he isn't compassionate. Most of us on here are, but we have had a few difficult people occasionally, and there are many vascies who are not on this forum. I do agree with you, though, that the vascies I know of and interact with are quite compassionate and caring, and I'd add that they are mostly quite intelligent and literate. I hate to think of those whose lack of writing and communication skills may make it hard for them to participate in a forum such as this one.
    Anne, dx'ed April 2011

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    Tom, your ideas of getting WG from substances exposed to while doing railroad work sound plausible. Also your reference to not getting proper rest makes sense, since that would cause stress, which is another thing often cited as a trigger. And the spinal cord injury, cancer surgery, etc. It seems there are so many things that could be candidates. BTW, I have not had kidney involvement, as yet, for which I consider myself lucky.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Tom, your ideas of getting WG from substances exposed to while doing railroad work sound plausible. Also your reference to not getting proper rest makes sense, since that would cause stress, which is another thing often cited as a trigger. And the spinal cord injury, cancer surgery, etc. It seems there are so many things that could be candidates. BTW, I have not had kidney involvement, as yet, for which I consider myself lucky.
    I even asked the Dr if it was possible that this could have been dormant from birth! While on the railroad, I had a foreman who him and his wife had 3 kids none survived but one died the same day, at the same hospital that I was born. Two of those boys born that day died from a virus they told him, one of which was his son! He said I must have been the boy that went home! That was in 1956, I felt funny but the foreman was okay and actually took me under his wing so to speak and visited my home as he and his wife traveled after retirement. Anyway, the Dr says it wouldn't lay dormant and reminded me that there is no known cause! I'm fortunate in so that they were able to stop the destruction of the kidneys, at least for now, but my lungs they couldn't get the Wegs under control in time.
    Are you on oxygen? I'm learning all the time new limits. Dr tells me no more working because the lungs are that far gone now! I try to do things like use a chain saw for small trim jobs for my wife but its cut a 3 in branch and rest, cut another, rest and then it was cut one more and told her to take me to the house. I got as far as the deck and told her to just bring my concentrator hose to the deck. I took my oxygen tan off!
    You said it got in your sinus also? Usually the first thing that goes, mine too! Do you have any sense of tast or smell? I get only bad smells but I think its sinus infection alot of times! I Was getting frustrated with my wife. I would accuse her of not putting onion in some dishes that I like and she swore she does! I watched her one day and yes she did use lots of onion, but I never tasted it. Frustrating to say the least!
    Anyway, I find myself trying to find answers everyday while keeping up a good outlook on things!
    To Chas, you will no doubt like me, and others, wondering what you did to deserve such an opportunity to experience this thing called Wegeners!

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    Quote Originally Posted by Tom View Post
    Are you on oxygen? I'm learning all the time new limits. Dr tells me no more working because the lungs are that far gone now! I try to do things like use a chain saw for small trim jobs for my wife but its cut a 3 in branch and rest, cut another, rest and then it was cut one more and told her to take me to the house. I got as far as the deck and told her to just bring my concentrator hose to the deck. I took my oxygen tan off!
    You said it got in your sinus also? Usually the first thing that goes, mine too! Do you have any sense of tast or smell? I get only bad smells but I think its sinus infection alot of times! I Was getting frustrated with my wife. I would accuse her of not putting onion in some dishes that I like and she swore she does! I watched her one day and yes she did use lots of onion, but I never tasted it. Frustrating to say the least!
    Anyway, I find myself trying to find answers everyday while keeping up a good outlook on things!
    To Chas, you will no doubt like me, and others, wondering what you did to deserve such an opportunity to experience this thing called Wegeners!
    No, I'm not on oxygen, not even close. Even though it went into my lungs, it was caught and treated in time to avoid a lot of damage, and my lung function, while probably not what it was before WG, is not bad. I just get out of breath a little sooner than I used to, because of the scarring from the damage, but it doesn't affect my daily life a whole lot. The sinus and ear involvement started 2.5 years prior to diagnoses, but Wegs wasn't suspected because it just seemed like the kind of problems a lot of people have, recurrent sinus infection, allergies, etc. The big ear infection at the beginning should have been a clue. This whole scenario of a delayed dx is common with sinus involvement. It took the eventual lung involvement to get a dx. And the sinus takes a lot longer to clear up with treatment, or at least it did for me, and I and many others incurred complete erosion of my nasal cavity and permanent ear damage and hearing loss. I don't have any sense of smell, except occasionally I think I catch a whiff of something. Don't know if it could be my imagination, but it seems to take me by surprise when I'm not thinking about it. As for sense of taste, I still have that, but it is not as sharp as it used to be. All in all, I'm doing quite well, with a normal inflammation level shown in my last blood work. I'm still taking prednisone, MTX, and Bactrim. I was intitially started on CTX to knock out the lung stuff, and it worked very well. I hope there is a chance you will get some of your sense of smell and taste back... some people do. I also hope you can get off the oxygen and back to a more normal life!
    Anne, dx'ed April 2011

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