vasculitis / renal fialure with dust exposure in your worklife .

[morgan33]

Hi , i am very interested as to know how of patients with wg / renal problems or even failure that have been exposed to any dust in your working life , i mentioned this to my consultant yesterday and she said shed never heard of a link between silica dust and wg which disturbed me as ive read many sites saying there is a definate link so any stories shared would be very interesting , thanks lee bird .

[PMRpro]

Hmmm - given how long it took me to find medical references for an association (couldn't read them all as they were behind a paywall of course) and the fact it is mentioned on the VasculitisUK as a theory though unproven I might be wanting a different consultant!

This

cjasn.asnjournals.org/conte...

says:

"Many factors, either directly or indirectly, have been considered important in the development of ANCA: Silica exposure (9); genetic predisposition (10); bacterial infection by Staphylococcus aureus (11); viral infection by, for instance, parvovirus B19 (12); and thyroid drugs (13) all have been correlated with and held to contribute to the incidence of ANCA-associated vasculitis. Some of these hypotheses are still the focus of ongoing research, whereas others have been put aside. Most of the proposed mechanisms did not disappear from the spotlight because they were proved wrong but because they could not be proved right."

[morgan33 in reply to PMRpro]

I think you may be right about changing consultants mine have looked after me brilliantly but are renal specialists and i think i might recieve better attention about vasculitis elsewhere as i was disappointed to hear she had never even heard of a link .

[Hidden in reply to morgan33]

Hi Interesting. I know how you feel, morgan. I felt the same. I bet that this happens quite often. Certainly, it did happen to me. I was quite amazed by the "brickwall" / "in denial" by drs who would be unwilling to admit certain associations. They never had the illness themselves, to begin with and certainly they aren't interested in the subject so they never "thought about it" even if there are hundreds of articles re. the possibility or likely association all over the internet (e.g. medical articles). Saddest thing is that, you would end up more like an expert after years of living with the condition and learning about it and you would have to deal with drs who aren't as informed as you and they think they know better than their patients. WRONG..They don't!! LOL...(I know it's not a laughing matter but you might get my point?)

[wooddustaffected in reply to Hidden]

Hi, It is now proven sufficiently for it to be widely accepted by most. There is actually a great deal of peer reviewed evidence of it too but WG comes under approx.. 12/13 different headings so jot easy to research properly. Both my husband and I both have WG (GPA) (no we didn't meet via a support group) and he's a wood machinist who's worked with natural wood but mostly wood composite boards such as MDF, chipboard/particleboard, etc. For 5 years he was exposed to a wood cement board that had high content of asbestos and silica. As you will know it's not compulsory to wear PPE in the wood trades. Both natural wood and wood dust rom wood composite boards contain a high silica content. The wood industry has a problem with crystalline silica proving from their own research that premature blunting of industrial strength diamond and tungsten carbide metal saw blades, is caused by the finding of a high silica content in the wood or wood composite board as the cause. If it causes this level of damage to metal blades then what harm is it doing to the lungs of those inhaling it daily, together with an assortment of other carcinogens and toxins, PAH's and possibly dioxins? There are many people out there who are not aware that their current or previous environmental or occupational exposures could be causing their illness, as often they don't go far back enough in their work history or indeed that of a partner, wife, husband, father. When they look more closely the common denominator very often is always dust that is highly likely to contain silica. Any worker exposed to anything harmful takes it home on work clothes, hair and skin to expose loved ones. With any dust the finer the dust, the smaller the size of dust particles the more harmful it is. The dust you can't see is the most harmful. With crystalline silica freshly fractured silica, such as when sawing or sanding, etc., is more harmful, more toxic so fast acting than aged silica. Such a lot to share. If it was a virus or infection more people would suffer from it, it would not be a rare disease, and more would have it in the same family. It's actually extremely rare in families. For example, we are said to be the only known confirmed husband and wife to have WG in the world! The Doctors said the odds are 100 million to one ! So not by chance then. Hence why they said It must be caused by an exposure, hence my years of research.

[wooddustaffected in reply to PMRpro]

Hi, It is now proven sufficiently for it to be widely accepted by most. There is actually a great deal of peer reviewed evidence of it too but WG comes under approx.. 12/13 different headings so jot easy to research properly. Both my husband and I both have WG (GPA) (no we didn't meet via a support group) and he's a wood machinist who's worked with natural wood but mostly wood composite boards such as MDF, chipboard/particleboard, etc. For 5 years he was exposed to a wood cement board that had high content of asbestos and silica. As you will know it's not compulsory to wear PPE in the wood trades. Both natural wood and wood dust rom wood composite boards contain a high silica content. The wood industry has a problem with crystalline silica proving from their own research that premature blunting of industrial strength diamond and tungsten carbide metal saw blades, is caused by the finding of a high silica content in the wood or wood composite board as the cause. If it causes this level of damage to metal blades then what harm is it doing to the lungs of those inhaling it daily, together with an assortment of other carcinogens and toxins, PAH's and possibly dioxins? There are many people out there who are not aware that their current or previous environmental or occupational exposures could be causing their illness, as often they don't go far back enough in their work history or indeed that of a partner, wife, husband, father. When they look more closely the common denominator very often is always dust that is highly likely to contain silica. Any worker exposed to anything harmful takes it home on work clothes, hair and skin to expose loved ones. With any dust the finer the dust, the smaller the size of dust particles the more harmful it is. The dust you can't see is the most harmful. With crystalline silica freshly fractured silica, such as when sawing or sanding, etc., is more harmful, more toxic so fast acting than aged silica. Such a lot to share. If it was a virus or infection more people would suffer from it, it would not be a rare disease, and more would have it in the same family. It's actually extremely rare in families. For example, we are said to be the only known confirmed husband and wife to have WG in the world! The Doctors said the odds are 100 million to one ! So not by chance then. Hence why they said It must be caused by an exposure, hence my years of research.

[MAC12]

Hi there. I know that there has been discussion elsewhere on here about the possible link between dust inhalation and WG/ GPA. I can only add my own anecdotal information. During my twenties I worked in the building trade, quite often in dusty conditions and cutting stone etc with angle grinders. I also used a material called vermiculate for loft and other insulation which I believe contains silica. Thirty or so years later I developed WG/ GPA which manifested itself mainly as lesions in my lung (which became infected with staph aureus) and renal problems. Treatment has led to remission but it's hard not to wonder if dust inhalation all those years ago wasn't a cause, maybe even THE cause on my condition.

[KirstyW1999]

I was diagnosed with GPA Feb this year. I was exposed to dust as I was involved in renovating 2 homes in the past 10 years. Both involved knocking down walls and I mixed buckets full of yeso a form of plaster of paris powder to fit electric conduit etc in floors and walls.

My father also had polymyalgia rheumatica in his 30s he sadly passed away at the age of 57 from coronary heart disease.

I wonder if both the above effected my chances. I also had severe D and V for 2 days just prior to my symptoms appearing, did this prompt my immune response.

[wooddustaffected in reply to KirstyW1999]

Hi, Yes you have been exposed to crystalline silica, sadly possibly asbestos too if renovating older properties. Both crystalline silica and asbestos both linked to causing autoimmune diseases. It is now proven sufficiently for it to be widely accepted by most for silica especially. There is actually a great deal of peer reviewed evidence of it too but WG comes under approx.. 12/13 different headings so jot easy to research properly. Both my husband and I both have WG (GPA) (no we didn't meet via a support group) and he's a wood machinist who's worked with natural wood but mostly wood composite boards such as MDF, chipboard/particleboard, etc. For 5 years he was exposed to a wood cement board that had high content of asbestos and silica. As you will know it's not compulsory to wear PPE in the wood trades. Both natural wood and wood dust rom wood composite boards contain a high silica content. The wood industry has a problem with crystalline silica proving from their own research that premature blunting of industrial strength diamond and tungsten carbide metal saw blades, is caused by the finding of a high silica content in the wood or wood composite board as the cause. If it causes this level of damage to metal blades then what harm is it doing to the lungs of those inhaling it daily, together with an assortment of other carcinogens and toxins, PAH's and possibly dioxins? There are many people out there who are not aware that their current or previous environmental or occupational exposures could be causing their illness, as often they don't go far back enough in their work history or indeed that of a partner, wife, husband, father. When they look more closely the common denominator very often is always dust that is highly likely to contain silica. Any worker exposed to anything harmful takes it home on work clothes, hair and skin to expose loved ones. With any dust the finer the dust, the smaller the size of dust particles the more harmful it is. The dust you can't see is the most harmful. With crystalline silica freshly fractured silica, such as when sawing or sanding, etc., is more harmful, more toxic so fast acting than aged silica. Such a lot to share. If it was a virus or infection more people would suffer from it, it would not be a rare disease, and more would have it in the same family. It's actually extremely rare in families. For example, we are said to be the only known confirmed husband and wife to have WG in the world! The Doctors said the odds are 100 million to one ! So not by chance then. Hence why they said It must be caused by an exposure, hence my years of research.

[morgan33]

Hi thanks for your replies , having only really been affected by my illness from xmas i only really know the basics of wg from consultants but mainly from the internet and i can only understand it more if i know how i might have contracted it , but i do know the years of dust exposure on a daily basis and listening to many other stories from wg patients that dust has to be a major factor even if the most we can get from the drs and the people we place our trust in is that its a possibility .

[Hidden]

"but i do know the years of dust exposure on a daily basis and listening to many other stories from wg patients that dust has to be a major factor even if the most we can get from the drs and the people we place our trust in is that its a possibility ."

I hear you. Funny thing is that lots of drs still behave as if we are still 30 years ago..many of us read or listen nowadays if we are concerned by something. Their clinical environment dramatically changed thanks to patients education but they still behave as if "patients shouldn't be heard"..essentially, your concern isn't taken seriously, you are supposed to be quiet do not ask questions wasting their important clinical time.. Of course, silica is a KNOWN environmental trigger for autoimmune diseases not just V, you would be totally ignorant if you did not know this fact and if you happen to have MD title! sorry to be blunt. There are drs who are on our side but to lots of drs, we are on the other side, they have their interest and we have ours..sort of drs vs ignorant patients who should be grateful of whatever they get from these drs in their busy clinic schedule. It's not unusual but patients are losing faith in these drs pretty fast as a result.

[wooddustaffected in reply to Hidden]

So very true 'Hidden' but we need more to speak out that have the knowledge. Please don't stay hidden any longer. 😊

[wooddustaffected]

Hi, It is now proven sufficiently for it to be widely accepted by most. There is actually a great deal of peer reviewed evidence of it too but WG comes under approx.. 12/13 different headings so jot easy to research properly. Both my husband and I both have WG (GPA) (no we didn't meet via a support group) and he's a wood machinist who's worked with natural wood but mostly wood composite boards such as MDF, chipboard/particleboard, etc. For 5 years he was exposed to a wood cement board that had high content of asbestos and silica. As you will know it's not compulsory to wear PPE in the wood trades. Both natural wood and wood dust rom wood composite boards contain a high silica content. The wood industry has a problem with crystalline silica proving from their own research that premature blunting of industrial strength diamond and tungsten carbide metal saw blades, is caused by the finding of a high silica content in the wood or wood composite board as the cause. If it causes this level of damage to metal blades then what harm is it doing to the lungs of those inhaling it daily, together with an assortment of other carcinogens and toxins, PAH's and possibly dioxins? There are many people out there who are not aware that their current or previous environmental or occupational exposures could be causing their illness, as often they don't go far back enough in their work history or indeed that of a partner, wife, husband, father. When they look more closely the common denominator very often is always dust that is highly likely to contain silica. Any worker exposed to anything harmful takes it home on work clothes, hair and skin to expose loved ones. With any dust the finer the dust, the smaller the size of dust particles the more harmful it is. The dust you can't see is the most harmful. With crystalline silica freshly fractured silica, such as when sawing or sanding, etc., is more harmful, more toxic so fast acting than aged silica. Such a lot to share. If it was a virus or infection more people would suffer from it, it would not be a rare disease, and more would have it in the same family. It's actually extremely rare in families. For example, we are said to be the only known confirmed husband and wife to have WG in the world! The Doctors said the odds are 100 million to one ! So not by chance then. Hence why they said It must be caused by an exposure, hence my years of research. Please anyone PM if you wish.