wegeners

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This disease progression is awful. I've watched a sibling go through it and battle it into remission, [taking a year to do so] then seen it evolve with a vengence 8 years later to it's fatal end. It seems little is known about this disease, and not much is spent on studying it because of it's rareity. However, in on line research seems to show it is on an increase which would support that environmental exposures could be a factor.

My sibling was in great health and very active. Wegeners showed up shortly after he built his own house, and also started making a living doing tiling. Many of the mastiks, mortar, and grout used in tiling and contstruction has petroleum products in them. His past reflects Allergies another common denominator. Once in remission he went back to tiling, and later bought temporaputic beds that basically are petroleum waste products that create harmful outgassing from body heat. He did not know that at the time and within a few months the wegeners came out of remission. His little dogs also showed illness during the time they slept on the foot of these beds. It seems more than a coincedence that petroleum workers have come down with this dreadful disease. More studies should be done to determine the link between wegeners and environmental toxins.

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  • Posted

    I have Wegeners and at present being treated at Hammersmith Renal Clinic I have agreed to take part in a study for research into Mucosal cytokines and chemokines in vasculitis I live on a very busy road A41 lived here 8 years I would say I was healthy until the beinging of this year when all the symptoms began. It feels like an allergic reaction especially all the sneezing and swelling that comes with WG. The research doctors said the are trying to see if there are connections to toxins and allergens in the environment. So sorry you lost your brother to this horrid disease. I am going trying to get to remission stage doing what I can.
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  • Posted

    oh I am so sorry and you are right.  I have been trying to find links but I just get met with I don't know answers.  There must be a cause...a trigger.  It won't help you now but i do want to pass on my sincere sympathy.  I know what this loss is like
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    • Posted

      I have contacted many specialists about the effects of dust as I have been exposed to it from a manufacturing site for years.  No one will commit to the cause and I suspect that has to do with fears of law suits.  I do wear a mask a lot when in areas where there may be infections - shops, hospitals, busses.  Nearly everywhere now.  I am in remission and fear a trigger.  If anyone hears of a specialist who has any knowledge on triggers please add it here.
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    • Posted

      I believe you are right about fear of legal action if they make a connection.  I was exposed to an unique dust for years but could not get anyone to say there was a connection.  The environment is becoming more dangerous and I fear for the youth who will be exposed to even more.  I have Microsopic Polyangitis, renal failure, bronchiectasis and just had ear surgery.  One would wonder where such a buffet of symptoms could arise.  It is necssary to continue asking questions and making rare diseases better known so that the research will be done.
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  • Posted

    i was diagnosed with PAN 30yeras ago an dsince have now been diagnosed with wegeners (GPA).....i work in the petrochemicals / oil & gas industry all my life....when i was in remissionn with PAN i never thought that i would relaspe into something similar but slightly different......anyway i was started on 60mgs of pred and rituximab infusion, since then (18months ago) i am now down to 12.5mgs pred and 150mgs of imuran, but since in cannot reduce my pred down to 10mgs of pred without symptoms returning i have been on another dose of rituximab.......hey ho hopefully this will work and let me get of the pred.....
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  • Posted

    So sorry you have encountered Wegeners now.  It is nasty.  I was on oral chemo plus prednisone and cell cept in the beginning along with a buffet of other meds.  It did knock it into remission after a year but I have renal failure.  By that I mean I have 28% and function okay.  I remain on Cell cept and blood pressure meds to give me some protection.  I fully believe environmental factors are at play and that there are many more people with this than are diagnosed.  i am the first patient for my family doctor with it and he has been practising for over 30 years.  I believe many have passed through his doors and have passed away with respiratory or renal symptoms.  There needs to be more research and education of physicians to recognize it.
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  • Posted

    I feel the same the water was contaminated by hexvalent chromium and vanadium but just found this out. By coal ash from Duke Energy. I feel if I could have known and told dr maybe different diagnosis. Environment and what I have read about coal ash mickkes wengers
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