I m trying to prove the chemical benzene causes lupus SLE.
How many of you worked in plastic production, worked in coal mining, worked with fuel, smoked cigarettes, was exposed to second smoke, used pesticides or got breast implants before you developed lupus SLE
Hi and welcome to this very friendly, helpful site.
May I ask why you think benzene may be a cause of Lupus.
Thank you and take care
Because plastic production, coal mining, pesticides, car exhaust fumes and cigarette smoke all got the chemical benzene.
And an American celebrity got breast implants before she developed and online one of the chemicals in breast implants is benzene.
Also the number of cases of lupus in Nigeria has been going up and before this it was reported drinking water had 900 times the limit of benzene.
I personally think skin lupus is caused by UV light and a gene which is meant to repair the skin.
Very interesting..
I used to reside, literally, on top of a busy motorway as a child and my regular hospital admissions did not end until I was in my late 20s. Any form of motor-vehicle-related smell (petrol etc.) would set off an onset of debilitating, frightening, and excruciatingly painful symptoms. Back then, lupus was not so well known, so my diagnosis at that time, and of what has transpired more recently, was actually Lupus and its associated conditions alongside some rare variations. i.e. I constantly vomited, long periods of being unable to walk due to pain, overall weakness, fluctuating weight, an addiction to dark rooms, intermittent hair loss, alongside my eczema, frequent prolonged nose bleeds, I had lesions that became infected, dry mouth, nose bleeds, chest and throat infections and asthma attacks.
For the past few years, and repeatedly shared with my medical consultants, persistent and prolonged periods of secondhand smoke, triggers some of my AI symptoms at varying levels. For example, my living environment became affected by prolonged periods of secondhand smoke that aggravated all of my AI conditions. History started to repeat itself. I was on steroids for a prolonged period of time so as to bring about some sort of stability but the marked improvement came about for one of my rare conditions only and this was not achieved by the steroids but by removing myself from the affected area but this drastic compromise has sadly created other painful joint-related conditions. My decision turned out to be a risk-benefit. The outcome was to be as expected, one of my rare conditions rapidly stabilized after struggling for 4 years within a toxic environment. Unfortunately, due to the location and frequency of the smoke, the other symptoms are resistance to change. The medication to achieve stabilization is now excessive.
However, there is a caveat, out of all of my medical consultants, 2 focused on the environmental factor with trying to keep the triggers at bay but this was due to other Lupus patients reporting similar experiences. Admittedly, the others acknowledged its presence but understandably, were more focused on quickly resolving the symptoms rather than equally focusing on the genesis: my environment.
Hope the above helps.🙂
Hi Mark, very interesting research! My answer is no to all of the above except for passive smoking, I grew up with a smoking parent and all my clothes smelled of smoke.
All the best—let us know if your research turns up any findings!
My answer to all the above is no. Actually I thought I was very healthy, no smoke, no drink alcohol, no work in polluted environments or live in polluted areas, no implants, etc. I was for the past 20 years vegetarian and eat mostly organic food since I was a child. I used to do lots of exercise and I honestly thought I was healthy. Although I always had strange allergies, I had neumonía when I was 4 , so I think this is one of the possible factors if not directly related to Lupus. My thoughts is my lupus has a genetic cause.
I believe lupus SLE is caused by chemicals and a gene. What was the air quality like before you developed lupus and is it lupus SLE
Can be exposed to benzene from car exhaust fumes
I lived in Bolivia until I was 27, so I think the air is better and not as polluted like in the U.K. Then after lived in the Borders , Fife and then Edinburgh. Lupus is more prevalent in Latin, Asians and Black race origin ( I read that somewhere). SLE but just diagnosed this year in April but my rheumatologist didn’t completely diagnose it as Lupus SLE. I’m taking HCQ
Was there a petroleum company in your community
well a gas company but they were miles away from my home.
did you have a car before you had lupus because you could have been exposed to benzene while filling up your car.
none of the above for me either I’d say chronic stress and also an elderly relative with rheumatoid arthritis so some genetic component too!
it is still possible the chemical benzene and genes caused your lupus because the chemical benzene is inside household products such as washing machine powder.
I believe all my autoimmune problems started with an extremely bad virus I had when I was 58, I was very healthy before that, now I have MCTD, skin lupus, lymphoma and tons of food allergies to name but a few. At the time of the virus I attended the infectious disease unit at my hospital for a year getting bloods checked, had every test under the sun, my legs kept giving way and I slept for about 4 months, it floored me. In the end they said it must have been a new virus so I told them to call it the Lizzy Virus lol. I’ve never been the same since.
same here. After a virus infection
Did you live in a other country apart the United Kingdom, visit a hot country or did you use sunbeds because I personally think skin lupus is caused by UV light and a gene which is meant to repair the skin.
sorry it’s a no to all your questions, I live in Scotland, not too much sun here.
what type of skin lupus have you got because I am wondering if people with skin lupus in the UK have got a more mild skin lupus compared to people who live in countries like Spain, Portugal
I have cutaneous lupus, I’m on hydroxy and use dermovate and elecon to control it and use factor 50 sun cream.
I was reading something in the environmental could affect your genes if you got the lupus gene then something could trigger the lupus. Like stress or a virus.
all my autoimmune problems started with a new virus which lasted about six months, I attended an infectious disease unit at the hospital for a year, getting bloods done before the consultant told me it must have been a new virus, I was really ill with it. I had traces of swine flu in my blood as well.
HI Mark interesting research but no to every think on your list as well I am afraid . Don't smoke or drink . I lived in Malaysia from birth until 19 yrs then was in the UK for 3 year then back in Malaysia for 18months the.back in the UK eversince. up until now ..As for environmental factor in .Malaysia the Air has always been smoggy where I live there is a large industrial estate not far from it it was built later in my years . before that the areas where o live were mostly oil palm trees and rubber trees
In the UK where I live we live about 1mile from the motorway. But the place we are is huge amount of trees. and backing on to the country side
I have had SLE for 12 years now from diagnosis but presented systoms about 5 years before that
All the best in your research.
i didn't
worked in Asbestos, steel works shoots enviorment, and in most industries a bit with job I did.
none of the above , apart from car fumes making me feel sick as a child. Mine developed after receiving Hepatitis B vaccine. Purely coincidence, I don't know !
I do remember mouth pipetting benzene when I was at school and university and a bit of playing with mercury, but that was 50 years ago. I had glandular fever when I was about 19, but my health was never right after having flu and a chest infection when I was 9 months pregnant at . I think menopause was the big trigger for me.
No to all the above Mark. My symptoms started after a hysterectomy.
For me, none. I was diagnosed at 14. I grew up in a busy city so there was pollution but nothing out of the ordinary.
My symptoms started after a very, very sunny holiday where I didn't wear much suncream which we believe to be the cause of the flare up. But other than mild asthma & a few minor allergies I was always a healthy child.
Maybe the car exhaust fumes caused it. I think if you have got the gene then car exhaust fumes could set it off and car exhaust fumes have been linked to asthma as well.
Hi,
None of the above except exposure to passive smoking - worked in the NHS for the last 20 years.
Take care
Hi Mark,
none of the above for me. I have been anemic since I was a child and so apparently that was a big trigger, my immune was already pretty low. Before I had the covid jabs I was diagnosed with lupus and so the theory was I wasnt so well already and covid triggered the lupus.. im saying before covid jabs as many assume the jabs got me unwell but I stopped speculating now. I think a lot of it comes down to our genes. All the best in your research.
Hi Mark
None of the above. Mine was triggered initially by stress and sunlight is now a factor. The underlying cause is genetic, I have Rheumatoid Arthritis too, as did my grandmother and great grandfather.
Jennifer
what type of lupus have you got
SLE
what part of the UK do you live in. I ended up getting asthma due to car exhaust fumes so it's possible you could got lupus SLE due to your genes and the chemical benzene. Benzene is in detergents, if you can afford it you might be better off buying a environmental friendly detergent. Don't use bug spray because insecticides has got the chemical benzene.
I am in East Anglia. The main pollutant here for me is the fungal spores from the base of the crop stalks after they have been harvested. It caused my hayfever to worsen when I moved here and affects my asthma (which developed after I had covid, so that's another trigger).
The only city I have lived in is Liverpool for a short period many years ago.
Very interesting research. I think it could be one of the causes for some people.
According to my research, toxins (smoke, chemicals in perfumes, make-up, cleaning products, pesticides, herbicides, metals....), parasites, viruses/bacteria, food intolerances, antibiotic abuse, UV, stress, in combination with a handful of genes can trigger chronic autoimmune diseases such as SLE.
I believe that no matter how healthy we think we eat, drink or breath today, we are not free from all of these unnatural human made staff. I think what always helps is to try to live as healthy a life as possible even if it is sometimes very difficult.
In some places they analyse nutrients, vitamins, minerals, toxins, parasites, etc in blood and urine tests but I haven't seen it in conventional medicine. I wish it was directed more towards prevention in that sense. What evidence do you have from your research?
Good luck and keep us informed 💜💜🦋☘️
A woman who was a emergency responder at the 9/1 1 terrorist attacks developed lupus SLE and it was reported people at the twin tower were exposed to the chemical benzene due to aviation fuel.
I personally don't think viruses/bacteria causes lupus because you could have been exposed to hazardous chemicals in the environment while out walking and the lupus gene is going to make you more vulnerable to these chemicals.
if you get a virus then this is probably when you are more likely to notice that something is wrong and If I go outside it's not going to be possible for me to avoid the chemical benzene because there is vehicles.
The stress that woman must have been under must have been inhuman, why the benzene and not chronic unreasonable stress? Or the stress that can be caused by a serious or chronic infection like Epstein Barr (which is latent and not doing any good) plus the side effects of prolonged antibiotic use that kills the microbiota?
The chemical benzene is in the environment a lot because a lot of industrials use it and if you out walking near traffic then you are getting exposed to it.
if you look at what benzene does to your blood then you will see why it's a strong possibility benzene causes lupus
I don't think hormones cause lupus and think its a female gene and chemicals which cause lupus SLE. And I think skin lupus is caused by UV light and a gene which is meant to repair the skin.
i think it could be proved benzene causes lupus if scientists exposed mice to benzene then mice might develop lupus.
if you don't think viruses play a part then maybe read the latest scientific study on the Smithfields plague pits dated 20th October in the Independent. Its shows that the plague affected gene ERAP 2 which is connected to the immune system and possibly today's auto immune illnesses.
you don't think hormones are to blame either yet 90 % of women are affected surely more men work in industries with chemicals ?
I have auto immune illness on both sides going back to my grandfather having rheumatic fever ( AI inflammatory response to strep virus) in 1914 same with my dad in 1940s and mum has hashimotos auto immune thyroid as do I.like others who say illness was a trigger my Lupus became apparent after a chest infection caused pleurisy in both lungs.
like so many illnesses it's a puzzle that will never be solved I'm afraid ......
i think it's genes and not homones because women's genes are different compared to men's but some men can end up with genes that they should not have. Researchers have found a mutation in a gene that causes lupus SLE.
The first case of lupus was before the plague
don't think they had plastics,petrol and breast implants then lol
Hi Mark
I can certainly see where you're coming from with this, but I also think it will require a huge amount of funding and research to discover a link between any chemical and AI disease(s). Very sadly, the money and man power just isn't available.
It is just so, so very difficult to link cause and effect to any disease outcome, never mind a group of diseases such as AI syndromes, which are themselves very diverse in presentation.
My own feeling is that there are a multitude of triggers for AI syndromes.
If the genetically susceptible individual is exposed to such triggers at a high enough level, or chronically, at a time of 'weakness' due to hormonal changes/illness/virus/stress etc, then an AI may develop. In addition to all this, there could well be further susceptibility-protective variables to consider before the person actually presents with an AI syndrome.
Soooooo, there are lots and lots of variables, which make it such a very difficult topic to research. I do wish you good luck with this and please let me know if I can do anything to help.
Take care, xxx
I can't find any studies
Hi there,
I'm unsure of your particular background but I have worked in biomedical AI research, am currently working in medicine, and have had lupus SLE since a child. It was evident that a genetic mutation was to blame.
You appear quite dead set on benzene being the route of all problems in regards to SLE. But truly viruses, by nature, have a risk of causing prolonged hypersensitivity or autoimmune issues, particularly if they remain latent in the body. Research and application of essentially viral chelation, has been evidenced to remove the remnants of viral particles from the body and improve SLE.
Drug induced SLE is an often underdiagnosed but a way more treatable form. Many of the drugs today have the potential to cause autoimmune reactions, indistinguishable from SLE of other causes.
Women and those of Black origin are most often affected with SLE. Hormones most certainly have been held to influence SLE, and estrogen itself works almost as a pro-gene, able to attach itself to genetic material and turn on sequences and genes that are involved in SLE. Estrogen also is involved in B cell mediated immunity. SLE historically has been often seen in females at the onset of puberty or conversely in those at menopause, due to the turning on/off of genes - epigenetics essentially. And even with genes there is unequal penetrance and a while host of other factors at play.
It is not however X linked and is not a carried on the sex chromosomes, my own mutation, is that of TREX1, but there are many other related genes with differing influence.
Modern day, chemicals, circumstance, stress, medications, OCP, vaccines, all play a role in the increased autoimmunity of today. - some of these causes if tackled or treated can lead to remission. But those with truly genetic SLE are still going to often need lifetime medication and selfmanagement.
Only last week when peer reviewing a new article within the well established scientific journal 'Nature', there was a study suggesting autoimmune disease of today we're due to a Darwinian selection from that of the Black Death.
We largely have the data and knowledge at present imo to deal with SLE on an individual personal genetic level, but there are ethical and moral and costly issues that pertain to that.
All the best, Lottie
I personally think viruses might not be a cause because if you have got lupus then you might only notice when you catch a virus.
Nunber of lupus cases in Nigeria has been increasing and it was reported 900 times the limit of benzene was found in the drinking water.
A woman who responded to the 9/11 terrorist attacks developed lupus SLE and people at the twin towers was exposed to the chemical benzene due to the fuel from planes.
And an American celebrity said she developed lupus SLE after getting breast implants. One of the chemicals in breast implants is benzene.
fantastic reply lotte
Cheers SML, though I'm unsure if my response had any impact haha. 😅
It did on me Lottie 🤗Thank you 🙏💜🌈😽😽
I ound it very interesting 🤔 maybe not as you say hes dead set xx
I just think it's a possibility viruses might not cause lupus because if you become unwell then that's when you are more likely going to notice something is wrong and you should look into what the chemical benzene does to your blood. Benzene causes anemia and lupus causes anemia.
Very well written!
Hi LL
I see you have the TREX1 mutation, which I believe is a major player in DNA repair. Would you share which hospital/research trial did the work to screen for this, please? From my understanding, these genetic mutations, which can be linked to Lupus (particularly skin manifestations), are extremely rare, particularly in Caucasians.
The TREX1 mutations present a very interesting line of research imho, which has only recently gained attention in the AI community and any info would be much appreciated.
Take care, xxx
Heya there 
Pretty rare, but dont mind sharing. It was done a little over a decade ago, as part of me being essentially 'a human guinea pig'. I was promised medication and pain relief for going along with my rheumatologist at that time. But sadly, he never gave me any medication, but I was a real life specimen at rheumatology conferences, pretty inhumane i know. Out with my consent at the time, he genetically tested and found the TREX1 mutation.
At that time, it was thought that my family must be a descendent of one of seven families who were known in the literature to have a hereditary systemic chilblain lupus (effectively severe chilblain lupus and SLE), and the sole surviving sufferers of the disease. That with time, has been shown others, as a lot of research since that time has been conducted. But it is rare to have homozygous mutations in TREX1, extremely so, but penetrance and epigenetics still play their role.
Because all this was performed under the radar, without consent, and for selfish gain, my rheumatologist didn't place any of it on the NHS system, later coming to deny things, but I still have some literature on it. But leaves me with questions for today. The day, that rheumatologist told my parents it was genetic, changed them for the worse sadly, and so for the last decade or so I have been continuing with life alone. For some, all they'll see is a mistake, or look at you wrong or weird, or diseased, or like a specimen, and not like a life and a human being. But hey ho, looking back as a few here also, I was the sick kid from birth. Always ill, not healing. Bloods never much to see, as the problem lies deeper. Most rheumatologists wont believe or understand when I speak of TREX1. So I generally just keep it simple, for them haha.
I am white and british, with a homozygous TREX1 mutation. I joke it must be the reason for my curly afro hair. If you want to speak more, you can DM me any time as well x
Lottie
Hi LL
Thank you for sharing, I just hope it didn't upset you by bringing back awful memories. You have had and awful time and it's dreadful that your 'trusted' Drs would undergo genetic testing of your family without consent 😡😡😡 I can certainly see why you're still angry.
Part of my interest in TREX1, relates to my own progressive muscle/ connective tissue disease: About 4 yrs ago I gave informed consent to be part of the 100,000 genome project, perhaps you've heard of it? My whole genome was screened (along with that of my twin sister as control) to gain insight into several rare diseases. Perhaps it comes as little surprise that I've been given very little in the way of outcomes, despite contacting them on several occasions. However, my rheumy recently diagnosed me with Ehlers-Danlos Syndrome and has referred me back to the same regional genetics clinic. I've been told that I'll be given an appt early in the new year - I'll have lots of Qs (!!), including ones about TREX1 mutations.
You're a strong lady to have come through this and I wish you all the very best, 🤗🤗🤗
Hey Megs,
Its absolutely fine for me to speak about, I am actually a believer that it should be something that we have the option through the NHS to get genetic sequencing to see if there are any of the more obvious susceptible or possibly causative genetic mutations. As you say it is a nightmare to get answers from.
EDS has alot of mutations typically that of COL1A1, COL1A2 and what not. Good to see your rheumatologist appears to be trying to help from a genetic perspective. I've had the diagnosis, as many, of lupus, given and taken from my medical record, as that of other AI issues and EDS. It can be a nightmare getting a proper diagnosis, and likely in part as the symptoms each will experience will differ so much.
Maybe targeting symptom relief, careful and thorough check ups, chronic illness counselling, and a thorough history to see whether it is acquired, or the agonist that is eliciting AI symptoms could be removed, and lead to lasting remission.
And lastly, due caution to genetic sequencing if the need doesn't arise, but rapid testing if it is pertinent or when other causes are all excluded.
Haha, ill stop rambling.
KR
Lottie
very informative post thank you
Hi, I didn’t grow up with any of these things apart from a parent that smoked. However I have 3 older brothers and none of them have lupus or any autoimmune disease. I myself have never smoked, drunk alcohol and I’ve always been active in sports until this disease has progressed further. I am highly photosensitive and that’s how it started off in my early teens and I was unwell with flu and got shingles whilst at secondary school although my GP at the time said shingles is only for old people. I’m 50 now and suffered on and off since 20 but no one knew what I had. It wasn’t until 2016 I was diagnosed a hell of a long time to cope being unwell. Since being diagnosed it progressed. There has been wide research about why this occurs. I have 2 children, older one is fine but my younger has juvenile arthritis. My mother had Psoriatic arthritis with psoriasis. I believe from what I have read that our health stems from the mothers side.
your older brothers might not have lupus because they don't have the gene. Cigarettes have got the chemical benzene and if you look into what it does to your blood then you will see why benzene might be the cause
lupus.org/news/childhood-ab...
The above list by Betty is fantastic. So thank you.
My link will take you to the relationship of child abuse and lupus. This is relevant to me and I’m certain many others on this forum. Perhaps one of Betty’s links also mentioned it. I hope just the one link will help you/Mark to understand causes of lupus is on going research and lupus may have a vast smorgasbord of triggers. I am one of 3 children all grew up in an abusive home. We all 3 have autoimmune diseases.
Best Regards Mrs Marigold ( formally Titters)
🤗🤗🤗🤗
no to all on your list too. I think mine was viral led, because I had a cold I couldn't get rid of at 13yrs old. Never grew up or worked in a smoke filled or chemical environment. Ate healthy, exercise. No implants or sunbeds. No hereditary connections either.
Marvelous resources, and I am sure they're terrifying reads.
I grew up in the country, but still inbetween 4 power stations, used to have to scavenge down a well, which wasn't fun, because the well was previously the site of an old secret cellar, full of poison, poison that I was head deep in, haha, as you do growing up in the sticks. All sorts of things like hemlock, arsenic, cyanide, mistletoe. Cures for the black death, ways to quicken death or kill prey, belladonna for beautification, all written in an old notepad, mostly illegible. Found with an impressive amount of other things, like crossbows, pistols etc.
Haha, none of the above probably helped either.
I found out indoor air generally contains higher levels of benzene than those outside and the highest levels are mostly at sites like gas stations.
I personally think your lupus gene could make you more vulnerable to harmful chemicals like benzene and if you get stressed then you are more vulnerable to catching infections.
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