I might be wrong but this is how I think lupus SLE is caused. You have a lupus gene and are exposed to a harmful chemical then at some point in your life after this something like stress, virus or infection triggers the first symptoms.
The cause of lupus SLE. : I might be wrong but this... - LUPUS UK
The cause of lupus SLE.
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That's what I think too... no evidence of course
I am not sure it is a gene or not but I do believe something was switched on.... I had shingles when I was about 30ish, after the shingels healed my body completely rebelled...fast-forward 9yrs of pain and suffering( putting it mildly)I was diagnosed with Lupus with secondary Sjogrens.
I had shingles too. And same outcome x
Same for me. Shingles started me on this journey. I have lupus n secondary Sjogrens too 💜🌈😽😽xx
I think genes have to play a big part of lupus because it's a rare disease.
I think it is genetic as I have several members of family with autoimmune issues. Mine was trauma, first symptoms were post my mother’s death, second after seeing my dad and triggered by strep infection which led to 8 weeks hospitalisation. Stress then brought it out as a living condition. Interestingly Covid, long covid and vaccines have sent it into a semi remission.
Definitely genetic. It seems to come from my Dad's side in my family. My Dad was diagnosed with Raynaud's last year (which I also have) and they are now also investigating Sjogren's (which I also have), his brother has crohns disease and thyroid issues, his father had AI issues (Raynauds is the only one I am 100% sure of), his brother also had AI issues and his daughter also has lupus. My daughter is currently being investigated for Raynaud's, Sjogren's APS, Lupus & hEDS (of which I have all) and there is a strong possibility my son had crohn's/colitis. My sister has no issues whatsoever. Too much of a coincidence to believe it's not genetic.
I honestly don't know how to reason with it anymore. As a child I'd be ill with a rash on my face and mouth so full of ulcers I couldn't even swallow my own spit never mind drink so ended up in hospital on a drip once. Then nothing for years. Then all kicked off again 10 years ago.
So many unanswered questions x
they can now spot lupus in babies in the womb. I read today
You could be right. I was talking to my Mum about why as a child I never had any illnesses except chicken pox. My siblings had the lot, mumps etc… but I just never caught anything, not even colds. Was this because my immune system was working overtime already ? I’m not quite sure how SLE works completely ? I did though in my mid 30s when I was pregnant get shingles, not fun ! So, maybe we are born with it ? I have had symptoms most of my life from my teens but it was when my sister passed, I had the full blown SLE experience and thus discovered my illness then.
So sorry, only just seen your post. Yes stress is a major factor, an emotional trigger , you poor thing. X We have so many unanswered questions x
This raises the question I often wonder about. Does this prevent other everyday illnesses? Do others find this?
I don't get colds, haven't had a cold for about 17years. I can be surrounded by really very unwell folk sneezing and coughing but the most I get is a gland under my arm pit up and a very slight sore throat that disappears in hours. My super charged immune system seems to batter any invaders - shame it attacks me in the process!! That said, I caught Covid that ravaged me within two days of exposure and I also caught a French flu about 5-6 years ago. Really poorly with both!
I always personally found that when my immune system is 'behaving', I can fight anything off without getting ill but when my immune system goes into overdrive (which it seems to have permanently for the last God knows how many years), I obviously flare and catch every bloody bug going. God I wish for my youth back when I all my AI's were well controlled.
Hi CSLO, I didn't get the normal childhood illnesses only whooping cough when I was 4, got shingles in my 50s although never showed signs of chicken pox , maybe possibly a carrier as my 3 sons had it when they were young boys, I have now been diagnosed with cutaneous Lupus and vasculitis, mostly feel quite well thankfully but have now noticed swollen glands in my right armpit, just wondering does your gland go down quickly or last a while, I also had a large gland/lump in my neck about 6 months ago which slowly disappeared over a number of weeks, reluctant to visit my GP again! I would love to understand what triggered my Lupus as I'm not aware of any family history of it, I've had a lot of stress in my life, widowed in my 30s but most people endure stress at some stage in their lives, I really appreciate some get more than their fair share of it. I feel lucky that I was never really ill as a child/adult until i suffered a few chest infections in my late 50s which was new to me. I wish everyone well on here and Best Wishes for Christmas & 2023. Stockcar Red
I caught everything when young, I have many siblings so I guess that was inevitable. I had chicken pox, mumps, tonsillitis many times and the usual colds. One weird anomaly was that I caught german Measles three times, each confirmed by GPs, at the ages of 9, 19, and 29. Totally bizarre! On the whole I was fit and healthy but did succumb as did my siblings.
The many disparate symptoms of my CT diseases started in my early 40s when I started perimenopause. It wasn't possible to join the dots as things would come and go and peri was exceptionally prolonged and vicious. It was only when I finally got to menopause at 58 that I was slam dunked and all became obvious. The colds stopped late 40s when the symptoms started revving up.
The gland under my left arm would frequently swell, it was no more than a large pea in size. Sometimes it would swell for days sometimes for hours. It was always an indicator that my body was fighting something. Until I started Mycophenolate M, my neck glands very regularly swelled, still do occasionally. It's always a sign that something has triggered the immune system but honestly, things can change on a day to day, hour to hour, minute to minute basis with me. It's like being on a roller coaster.
I think it was surging, off the richter scale oestrogen through perimenopause that was the final straw for me. We do have RA in the family and my mother has a positive RNP but never had any symptoms. I think for many of us it needs a few triggers coming together to 'flick the switch'.
Stress is a huge trigger for me, any sort of upset and everything flares. It's hard enough avoiding the sun and heat and too much exertion but stress is a tricky one. I'm not a stressy person, have always thrived in highly stressful situations, and now whilst I feel ok mentally, the immune system starts firing it's rocket cylinders. Such a giant bore!
Hi CSLO. I’m totally surprised to find another person whose neck glands swell. Before I knew I had lupus, if I fast walked 5 miles ( which I did regularly in my 30s and 40s) my left glands would swell and hurt. No Dr had very believable explanations and even ultrasound showed nothing. And this:
My body can not discern the difference between “good stress” like intense joy or happiness or “bad stress” one of my dogs gets out the gate and I search for hours🐶 bad dog. Big flare for both situations many times. I have to deliberately tone myself to mediocre. Does that happen to you? I think this problem could be a new thread. It is swollen right now from the activity of packing for vacation.
It's all pretty baffling but yes, pretty much the same for me. Dinner out with friends, old friends - no stress but I'll likely have aching joints and tendons and the usual melange of symptoms the following day.
My neck glands swell up when having most of the time.
Thank you CSLO for your prompt and helpful reply, I agree life is now like a rollercoaster, I get my head around one thing and something else shows up, I did decide to visit my GP today and have been referred for an urgent scan to determine whats going on, I'm quite concerned but trying to be very positive. It's so reassuring and educative to read other people's experiences on this very helpful forum. I'm still quite ignorant to Lupus. I was only diagnosed a couple of months ago but have had symptoms for a couple of years. Stress & anxiety are my worst enemies but I am trying to deal with them to try to reduce flares. I realise i've pushed my body over it's limit over the years and I feel it's retaliated with this autoimmune problem.
Once again many thanks for your reply and Best Wishes to all, take care, Stockcar Red.
How have you found mycophenolate? I've been having swollen glands. Been urgent referral to cancer screening for a camera down my throat and to the breast unit. Plus continously getting uti , had 5 lots of antibiotics in as many months. So had scans on kidneys, bladder etc. All are fine. My gp has said we have ruled everything else out. Must be your condition. Gp wrote to consultant, I've had a letter come through for 16th Jan. Which has surprised, pleased and worried me all at the same time as I've only seen her once when I was diagnosed in 2020. She suspected lupus but not enough evidence so UDCT . The ENT Dr that did the camera diagnosed sjogrens. I'm on 400 hydroxychloquine. I've list 3 stone, first with trying, tgen not being able to eat. So think the dose to high now but date not reduce myself as I know my immune system is not under control.
I'm thinking they nay change my medication so thats why I'm asking. So sorry for the length of this message.
I'm currently in bed on another course of antibiotics. Outbreak of strep A in my classroom. And of course I've come down with it just before Christmas 🤶
Sorry to read this Bonnie let's hope that you manage to bat it off quickly!
The Mycophenolate M has been really helpful. I have Dermatomyositis thrown into the mix too and that adds to the skin involvement. The MM has helped the weird myriad of different rashes, cleared some completely and helped the severity of flares calming many of the symptoms. I have 2-3 Depo Medrone intramuscular jabs a year if and when the going gets tough. I'm on 400 hydroxy too.
I have not experienced any side effects from the MM. They check bloods every 2 weeks to start of with just to make sure you're managing it well. I've never shown any negative reactions so my bloods are now done every three months. I'm always open minded about meds. I figure that we can't know till we give them a go.
It's great that your docs seem to be staying on top of things. Mine too check everything rather than assume everything is down to the CTDs. I'm awfully grateful for the support. I have had a whole host of 'ologies' checking me out.
All good wishes to you.
I agree. I believe mine was activated by trauma. I had an horrendous childhood. Raped at aged 8-9, neglected, abused. Kept it all in until I went to court 5yrs ago were my abuser was given 20yrs in prison. I never told anyone for 40yrs. I believe as does my dr, that keeping all that trauma in, the horrific childhood caused my lupus. I was diagnosed 17yrs ago btw but had it well before then. I also spend my career in childprotection helping and protecting other children, which didnt help! Now I live a stress free life as possible and look after myself, Ive recently had to retire from my career, through ill health. I hope my flares become less and I can start to have a better quality if life. Heres hoping! 🙏. Sorry for the long reply. But thats what I believe has called my illnesses......
I’m very sorry Monica T. We have similar experiences of childhood abuse with PTSD. Research in this area as cause for lupus is very telling. Very courageous of you to confront abusers.
My best counselor explained to me that as children and our brains are so vulnerable as they mature/the severe disruption of this Causes the neurotransmitters to form a pattern of grooves in our brains that is unlike healthy brains. This is a simplified description of what happens to our brains
So then our Central nervous system and on it goes and autoimmune diseases just have a great environment to grow in our ravaged bodies. Bless you. I get it. MrsMarigold
Thats exactly it MrsMarigold. Thank you for this. Love to you xxx
🤗🤗🤗🤗🤗🤗🤗
I really think it's an accumulative process of toxins in our body that make express some fenotipes we have that predisposed to autoimmune conditions. That's because we are in remission and flare up, depending the amount, depending our exposure. In rare cases is just one gene.
Chemicals (pollution,water, pesticides, parabens, fluoride, glyphosate etc...), heavy metals, sugar, processed foods, virus, bacterias, mold, fungus, parasites, estress create a bad microbioma in our gut and also intolerance and toxics go through our blood system and with the age our inmune system decreases and also our nutrients absorption and antioxidant process.
In my opinion blood tests of toxins, metals, parasites, should be done to eliminate (if it's the case) the root cause in first place. It's really worthy to try first of any medication with high side effects. Holistic/natural medicine do, why is it not done in the NHS or public services in any country? I have some opinions....
spot on! I have lupus. I became a holistic nutritionist as a result of lack of care and resources in the USA to get to the root cause. I’ve been doing all pathogenic tests and have discovered that I have viral and bacterial infections and gut and digestive issues, and the more I treat those naturally, the better my inflammatory markers appear. I now have normal C3 and C4 complements and my DsDNA keeps dropping. This is truly the solution we need!
my sle was triggered by a glass of newly pressed red wine thirty five years ago. This has left me with an allergy to red wine and any type of vinegar which sets off a major flare. Have a happy and healthy pain free Christmas everyone
We have autoimmune disease in the family, there's three of us who are coeliac, however my lupus was triggered by the birth of my second child (why not the first, I don't know).
Great discussion: glad you posted! mark👏👏👏👏
For what it’s worth: consultants think my infant onset lupus was triggered by 5 months’ in utero daily exposure to the internationally notorious endocrine disruptor diethylstilboesterol (DES) + connective tissue & immune dysfunction disorder genetic predispositions (paternal Ehlers Danlos + maternal mast cell activation disorder). Dermatology & rheumatology think my infancy lupus diagnosis in 1954 was the rare skin form named “Chilblain Lupus Erythematosus”, dermnetnz.org/topics/chilbl... which segued into systemic lupus over the decades, as forms of sk8n lupus can/tend to do. Interestingly, this DES exposure probably also tipped me over into childhood onset panhypogammaglobulinaemia, a type of Primary Immunodeficiency Disease.
At 69, after a life time coping with all this causing inexorable progressive multisystem debilitation & chronic pockets of bacteria driven sepsis all over my bod, i can’t imagine any other way of life 🤷🏼♀️…so maybe I am lucky to have had to adapt early & learn to self help/lifestyle mange intensively. I wasn’t taken in care longterm by rheumatology & immunology until my 50s, so no systemic immunosuppression meds until then, & no immunomodulation IgG replacement therapy & long term antibiotics. My consultants all say I’d probably have gotten a lot worse much earlier without all the self help etc. But it was a long hard journey mentally & physically, and it’s not over yet!
Thanks to everyone who is taking part in this thread: my feeling is that figuring out a plausible narrative can help us a lot to put up with it all…with help from Lupus U.K. & this wonderful Forum (I’ve been here pretty much daily for over 10 years) 💞💞💞💞 Coco
If you’re curious about DiethylstilboesterolSyndrome, this official info fills you in (DES was also used to punish Alan Turing… am adding a second link to info in that)
rarediseases.org/gard-rare-...
diethylstilbestrol.co.uk/ch...
💟💟💟 light and positive vibes to everyone on this amazing forum... thanks for posting. so interesting just as a matter of interest I'd never caught chickenpox and then I had a really bad attack in my 30s but I'd probably had a lupus grumbling throughout my childhood and there are other autoimmune problems in the family and I too have EDS hypermobility . take care everyone 🙏
😍☀️👍, yes: am leaning that way too…had really bad childhood chicken pox + dreadful poison Ivy & sunburn reactions….can’t believe these didn’t encourage/compound my existing immune dysfunction & connective tissue disorder! 💞💞💞💞
I never catch colds either, I used to think it was because I'm anaemic my blood isn't good enough for the flu/ bacteria to survive in let alone flourish.
I never catch colds either, I never get sickness bugs and I’ve never had the flu either x
Like you I don’t get flu or colds.
Just wondering whether some lupus sufferers have developed super antibodies against certain viruses?
A Prof once remarked about this. Also some people seem to have super antibodies against covid! And many posters on here despite vaccination and boosters still get sick!🥺🧐Very confusing.
I'd catch every cold going before I was 30 years old.
At about 30 yrs old I started my journey of 'weird and strange symptoms', but never catch a cold. 🤷♀️🤷♀️🤷♀️
For me it's stress that was the trigger. But the b*stard SLE was clearly lurking there all the time - I think there is a genetic predisposition to autoimmune illnesses like these.
I think there is this idea that those with a strong immune system were able to survive the Plague.
They were less likely to be very ill because immune system was very strong.
But then because of further genetic changes, stress or some strange infection the immune system that was strong then went rogue.
If this was the case you would expect more cases of Lupus in areas which had worst outbreaks of the Plague.
I believe personally, considering most AI's are genetic, obviously you are born with that specific gene and I agree that it is somehow 'triggered'. I don't believe necessarily it's due to harmful chemicals, but it is definitely triggered by certain things. I have had issues since I was a toddler; I was prone to heatstroke, mouth and nose ulcers, always had issues with my joints, tendons, ligaments, muscles (Docs always put it down to the fact I was extremely athletic), rashes, migraines, swelling of joints etc, livedo, problems with breathing (asthma ruled out), sun-sensitivity, light sensitivity, numbness in hands and feet as well as tingling, chronic fatigue & lethargy... Finally diagnosed at 16 after a massive stroke (had spent the previous 3 years constantly at the Docs every single week with some sort of health concern. I personally believe that although I always had symptoms, puberty probably more than likely kicked mine off. Just to add, I never had any serious illnesses as a child (bog standard normal measles and chicken pox) and was hospitalised for severe dehydration when I was about 18 months. No stress in my life whatsoever. Aside from that though, like I said, I just had loads of issues that were never treated or even investigated and things got progressively much worse after I hit puberty at 10 years old.
Hi Sher. As you say “ I never had any serious illnesses as a child” referring to the usual standbys measles etc……. It actually appears that you did suffer serious “ unconnected illnesses” as you were in Dr office a lot as youngster. Very sorry for this since these invisible illnesses really shape our childhood. And your stroke at such a young age. 😕 From what I’ve read, research shows we AI people have the DNA that is triggered by something. Not all people with AI vulnerabilities have the switch turned on in their DNA. Bless you how courageous of you to be so young and have AI sneak in and snatch your childhood!
Thank you. The reasons for my visits to the surgery were all lupus related (sun-sensitivity, chronic fatigue, swollen joints, chronic joint pain, rashes, ulcers, breathing issues, eye issues, migraines etc), but obviously I hadn't been diagnosed at the time so it was always just kind of fobbed off. I agree with completely about you saying that the gene isn't always triggered, you're just extremely unlucky if it is. I'm pretty certain (obviously not 100% sure) puberty kicked mine off as although I had issues before puberty, it seemed to all kick off tenfold once I hit it (my diagnosing rheumy who was a lupus specialist also believed it to be the cause with me) but it's something we can never be sure of. In regards to lupus messing up my childhood (and my life ever since I suppose), I can honestly say I'm not too bitter about it as I was so ill with the lupus (and comorbidities) for such a long time I don't really know any other way of life. Once I was diagnosed we managed to get on top of it & I had a good few years of it being in remission (with the odd blip here and there), but as time has gone on, each flare comes thick and fast, lasting for much longer and leaving more damage behind, but I accept it for what it is. I am lucky that I have enough distractions in my life currently to enable me not to focus too much on all the things I can no longer do and have adapted the way I do other things over the years but obviously as I'm getting older, it's getting more difficult, but it is what it is. I just hope that soon they can come up with newer treatment that will help anyone with lupus & AI's live a completely normal life. Mentally & emotionally I am quite strong but it worries me if my daughter gets diagnosed with this (she is in the middle of going through the process and we all know how long it can take) as she is quite a sensitive soul and I know she will have an extremely difficult time coming to terms with it and coping with it, but we'll cross that bridge when we come to it
Very well said. Acceptance of suffering
Is acceptance of life on life’s terms. Whether you are I’ll or healthy. 🌼
So many similarities! As a toddler I was hospitalized for anemia and had episodes of it through out my life. My parents smoked and pretty sure my mother drank while pregnant with all 5 of us (we all had something wrong health wise) we were poor and lived in a house that had stucco walls so whenever it was humid in the summer they would get wet and mold would start to grow and it was never cleaned, same thing in the winter from being cold in the house, we had radiators that hardly ever worked so when my father worked on them he let steam out and it wet the walls...this went on for years. As a teenager I went to the beach and got a horrific sunburn and I'm pretty sure it turned into sun poisoning, I was so sick for days. I also had another round of anemia to the point of passing out I was so weak I thought I was going die and I was so afraid to go to sleep because I thought I would die. Was taken to emergency room after passing out in a store and all the doctor said was I'm to skinny and to eat meat! Years later other things started going wrong, extreme fatigue, dry mouth and eyes, chronic pain, arthritis and the amount of medication I take is ridiculous and constant Dr visits or labs, x-rays. It's never ending. I had chicken pox and measles as a child along with my older brother with no complications. I believe our environment has a lot to do with our health as well as heredity and how our mothers take care of us during pregnancy.
A few months back there was a poster on here who was absolutely convinced his lupus was due to BENZENE exposure solely!😫🧐
Others said it was a complex mix of environmental factors and genetics, not just benzene.
I think the jury is still out!?
I think it's harmful chemicals that cause problems with the immune system that cause lupus SLE and benzene is one of the harmful chemicals which attacks your immune system.
please advise me: what is a Karen? Lol
New one for me. I think when you read all these different responses and consider the volumes of on going research AI diseases are complex and evolving. Genetic and chemically induced and emotionally ( trauma ) induced. My grandmother lived to 104. Never never sick. She grew up on a farm. Lived by a massive lake. It was pure. She had 6 children. One,my mother, was sick and fatigued constantly. Diagnosed as schizophrenic. My siblings and I believe she had lupus with CNS involvement. So here is Mother growing up on beautiful waters and eating pure food. Like my grandmother. Mother died at 60. I’m so Blessed for my inheritance 😂 Growing up with a mentally unstable Mother was traumatic. My thought has been : how many mentally ill people were shoved into “homes” or hospitals without the proper diagnosis? Millions I think. At least we are getting closer to answers 💜
"Karen" is a derogatory term for a white woman perceived as entitled or demanding beyond the scope of what is normal.
I too was never exposed to harmful chemicals. Mother smoked, but not while she was pregnant and not in the house. Never had issues with damp/mould etc growing up, wasn't as many car fumes etc as I was growing up so not really a massive exposure to any of that. Yes, environmental factors can trigger the lupus but nobody can say that conclusively when so many people go on to develop it when we've lead pretty pure lives. I will always believe it's genetic and gets triggered, generally by a shock to the system, such as stress, trauma, illness or such like. For example, my daughter was perfectly fine and healthy (although she had awful livedo and signs of Raynaud's) until she was about 15, then lupus symptoms began to creep in gradually (muscle pain, fatigue, ulcers, rashes etc). She got Covid, then bang, everything seemed to hit massively, chronic fatigue, malar rash, joint pain & stiffness etc so I believe the covid has possible been a catalyst for her.
I’m very sorry to hear about this news.
I too have a grown child with symptoms. It is painful to watch and we can only hope they resolve any sense of defeat and move on with hope.
I’m in the US. I do recall hearing “Karen” but not paying attention. I don’t imagine anyone is enamored with that name anymore. We just refer to them as elitists. No matter gender etc.. Have a Merry Christmas
There is high levels of benzene in the house due to household chemicals. I personally think lupus SLE is caused by harmful chemicals and genes then something like stress, virus or infection triggers the first symptoms.
The chemicals I think what cause it are chemicals which damage cells.
If that is the case I must have been bathed in it from birth then, otherwise how would someone, in a 'clean' environment, who had never experienced stress etc be displaying symptoms from various AI's since the age of approximately 2? Factor into that equation that many of that toddlers relatives also had various AI's that were triggered at various stages of their lives? I have actually worked alongside a lupus specialist so am pretty clued up on various AI's. You have your theory and others have their theories, regardless, just because someone has a differing opinion to you, there is no need to be childish and resort to name calling.
WHY ARE 90% of Lupus patients female? (Ref. Lupus U.K. website):
“…This is still not fully understood, but there are some broad explanations: Many of the genes responsible for the functioning of the immune system are located on the X chromosome. As females have two X chromosomes, whilst men only have one, they are more likely to inherit gene mutations that cause immune dysfunction. It is also recognised that hormonal activity is an important trigger. Lupus can often develop around puberty, after childbirth, during menopause and usually occurs in females between the ages of 15 to 55.…”
Not a ‘Karen’ type remark!👆☝️🤣
But since females have two X chromosomes, can’t the healthier one take over thus causing no lupus?
Any explanation anyone?🧐
A wonderfully perceptive explanation. Thanks.👏👍
Who or what is a Karen?🧐👆
WHY ARE 90% of Lupus patients female? (Ref. Lupus U.K. website):
“…This is still not fully understood, but there are some broad explanations: Many of the genes responsible for the functioning of the immune system are located on the X chromosome. As females have two X chromosomes, whilst men only have one, they are more likely to inherit gene mutations that cause immune dysfunction. It is also recognised that hormonal activity is an important trigger. Lupus can often develop around puberty, after childbirth, during menopause and usually occurs in females between the ages of 15 to 55.…”
Not a ‘Karen’ type remark!👆☝️🤣
But since females have two X chromosomes, can’t the healthier one take over thus causing no lupus?
Any explanation anyone?🧐
From the LUPUS Foundation of America:
lupus.org/resources/your-ge...
Is lupus genetic?
“GeneticsResearchers have now identified more than 50 genes which they associate with lupus. These genes are more commonly seen in people with lupus than in those without the disease, and while most of these genes have not been shown to directly cause lupus, they are believed to contribute to it.In most cases, genes are not enough. This is especially evident with twins who are raised in the same environment and have the same inherited features yet only one develops lupus. Although, when one of two identical twins has lupus, there is an increased chance that the other twin will also develop the disease (30% chance for identical twins; 5-10% chance for fraternal twins).Lupus can develop in people with no family history of it, but there are likely to be other autoimmune diseases in some family members.Certain ethnic groups (people of African, Asian, Hispanic/Latino, Native American, Native Hawaiian, or Pacific Island descent) have a greater risk of developing lupus, which may be related to genes they have in common…”
🥺🧐🥺🧐?
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