Good idea to have this survey, would be interesting to see the results!.
Mine started after major stress and I do have the family connection because my Grandmother had a thyroid problem which is auto- immune!. I was unlucky as it skipped a generation!. How about you?.
major stress for me too ....and my grams had RA...(also skipping a generation)..the hormone bit for me be menopause...I have hypothyroid which came first.... after man stress..lol
Paul might know about how to set up surveys..i sure would like to..
Lots needs to go into it (things to ask), then we need to have an average...be so interesting...ps/ that's my Dads mom had the RA...and my Dad had all sisters...be super odd he being the only boy, passing it on to his only daughter..(and I never knew my Gran either)...I really don't think my cousins have anything, but one did have thyroid cancer..
I know my rhumetologist was almost forcing me to say I had been ill at some point, but I hadn't...Here is the weird thing....I found out by coincidence my blood had the ANA at the time 1:160 speckly in 2008, I was having back issues and it was suggested to be tested for RA cause my Gran...RA was negative...So if I had lupus in 2008 and didn't know, its uber strange I didn't get the Norwalk virus from my Momma, because I was her caregiver...They sent her home from hospital too early, and my daughter got Norwalk and so did my nephew, but not me....In 2012 or 2013 on a whim after funny odd things happening they tested my ANA and it was then 1:320 and fine speckly and homogenous and some inflammation with that CRP test..
Its funny, I also was diagnosed with speckled pattern in 2000. was 1:160, and then again when i was tested a year later. I have many auto-immune problems and Shands Hospital wondered if it was genetic or environmental. I grew up in a Mill State..many factories. My sister also has a few auto-immune problems. My mother had got sick twice as a child for polio, and as years went on she had same symptoms as I have but she was diagnosed with post-polio syndrome. After her death we found she had APS but of course never tested for Lupus. The Doctor at Shands wanted my sister and I to both have tests done to try and determine genetics or environmental but she refused saying she did not want to be anyones guinea pig. I wanted to know and still do.
Joni Mitchell the famous singer had polio as a young person...she claims she has morgellons now, but I often think she might have post polio syndrome...The only stuff I had when younger was, a bad case of chicken pox...and horrible mumps....other stuff was mild...Im 58, so no vaccine then...I wonder too if my Aunt might have had lupus, as she was down to one kidney...and her Mum had, had bad RA...(on my Dads side)...but my Rhumey says lupus is just 5% hereditary..so confusing
I'm sure my consultant thought it was lying dormant after having my children, then flared up about 4 years after my daughter was born. I was lucky as I was diagnosed really quickly. (If you can call it lucky but you know what I mean)
at least you know what you have now, and yes that can be a good thing...I was diagnosed really quickly...kinda too quickly...but I keep trying to trace family stuff even if it is suppose to only be 5 % hereditary...I just wrote to all my female cousins on my Dads side.. I had an Aunty that had kidney issues, so that makes me wonder too.
I only had symptoms for 6 weeks they were getting worse but the doctors kept saying it was a virus, thing is a couple of ladies at my child's nursery had the same thing sore joints stiffness, so it was easy to think it was just a nasty virus. That was until I ended up in accident and emergency one weekend, seen on the Monday and because I had all the symptoms going my consultant (who happened to have done a lot research on lupus) had me diagnosed within 12hrs. Funny thing is my mum in law had mentioned lupus as she had seen some article, I just brushed it off though! 2 years of hell to get my meds sorted and I'm now working and running a house, with only fatigue being my major problem! Anyhoo I'm waffling on. I have no family that has had lupus unless its way back in my family tree, as far as I'm aware I am the first 😓 as long as I don't pass it on to my daughter 😓 but if it is only 5% then I'm sure she will be fine
so yours may have been virus...and you were/are of child bearing age (hormones)...maybe life stress too...but no hereditary....No wonder the researchers in lupus just don't know...it is perplexing.
Im really scared about having passed anything on to my daughter too...be a big fat bummer
I'm not sure if virus, but there was definitely alot stress over the years just with the usual things in life! I was 35. It certainly is complex, I was just lucky as I said before that my consultant had a lot of knowledge about lupus. I'm on the mild side (even though at the beginning it was hell). To be honest I try my best to forget I even have it!
Yes I am on 500mg of mycophenelate and one tablet of Hydroxychloroquine. I am really bad for forgetting to take them and my consultant wasn't too happy as I obviously need too, but he did reduce the myco from 2 tabs to just one. Personally I would like to come off meds all together, but I have to remember about the internal side of things I suppose.
Ya, that's the thing..you just never know. I do know that the large dose of vitamin D I was put on sure helped ...Ive been takin off hydroxycholorquine at the mo...It will be interesting to see my test results in July...I feel ok..some mild stuff here and there...My thyroid is behaving again, but that's since august (he took me off hydroxyl in January)...I still say its lots to do with post menopause etc, but hormones play into lupus often...so its all over lappyish...argg no wonder they are so confused by it....(the experts, I mean)
I'm suppose to take vitamin D too. I'm same as you by the sounds of it, mild symptoms all the time achy and sore joints but manageable. Tiredness all the time, but I'm working and have a house to run and two Youngish kids, so like most people with families etc you are bound to feel tired. I will be seeing my consultant in the next couple of months so will take it from there. I just have to remember to take my blooming meds!!! 😀
I was single parenting ,and looking after my ill Mom...and working with "Women from hell"...(in childcare)... and in my early 50's went back for more college ...:((BUT...try to not stress out (its impossible, I know)...and then there is this other bad thing I use to do, that im sure must have contributed...I use to have some serious talks with myself..."We can do this"...."come on push yourself"....etc....and when times were tough, I had no one to talk with...Because my Mom was ill...my brothers disappeared from the scene completely...So I was hard on myself, and no one to talk with...(DONT DO THAT!!!) Its like setting yourself up for a body attack...(just my thoughts)....
If the research has been done and published, google scholar is a good place to start looking, though you may have to pay for the article. Or do a search on the net for medical journals which often have databases you can search online - again, most you have to subscribe to or pay for individual papers.
Hereditary: Yes. I have been hypothyroid for about 20 years, and my mother, sisters, aunts and maternal grandmother are also hypothyroid. One of my aunts has fibromyalgia.
Major stress: Yes. I have a very stressful job and was trying to balance this with my husband's depression. I got an upper respiratory infection and never felt well after that.
Menopause: Yes. I'm 51 and went to the gynecologist thinking my cognitive issues, muscle aches, and extreme fatigue were menopause related. My GP referred me to a rheumatologist who ran a battery of tests confirming 'mixed connective tissue disease'.
Disease progress: I also have Raynaud's and Sjogren's. Rheumy is monitoring me for signs of scleroderma, but thinks the general disease state is lupus.
Hereditary: I think there is something strange in my family as my father had allergies and my mother arthritis and rheumatism.
Major Stress: I had a hysterectomy with complications and wrongly given two courses of a broad-spectrum antibiotic for a suspected infection when it was pieces of dressing pack mesh stuck to my insides for six weeks after the dressing pack was withdrawn. The antibiotics also carried a caution for administering to patients allergic to penicillin which I was and still am.
My parents were ill at the time and my dog was old and unwell. I was so ill, I couldn't go back to the job I loved.
Menopause: The hysterectomy sent me into an immediate menopause with many horrendous symptoms.
Disease progress: I already had allergies and was diagnosed with asthma 6 years before, but found leaving out dairy has helped this a great deal.
I have had lots of dental problems and I read that children with lots of caries should be tested for coeliac. I suspect I was always coeliac as I was anaemic a lot of the time before I gave up grains. I cannot be tested now because I would need to go back to eating gluten and I don't want to get so ill again just to prove something that cannot be cured, but just has to be avoided which is what I am doing.
Ive always had pretty good teeth, but around menopausing time, and lupus coming time, I suddenly was having teeth issues. Hormones can change saliva Ive heard...which can mess up teeth I guess...(not dry mouth, but just changes)...
A lack of good gut bacteria can cause it too and I suspect that is my trouble because the gut includes the mouth. I had so many courses of antibiotics in 2000 and 2001 that wrecked my gut, but I am sure many problems can affect the gut bacteria and the teeth.
But I always ate well (organic) and took good suppliments with stomach enzymes....I never get sick...Then bang, along comes menopause...then my problems started....Cause things get thrown out of whack in your body...(chemistry)...I don't have hot flush type things, but got night sweats.....and suddenly my teeth were acting up...Yes, antibiotics can screw up stomach...I had to take some of those ,when my teeth started up...
It is difficult to know why these things happen - was your job stressful or anything in your life because stress affects the good gut bacteria, too? Apparently 80% of the immune system is in the lower part of the digestive system and stress can deplete this army. Our bodies are under such stress these days with one thing and another, but usually something sets these things off. Menopause is natural and shouldn't affect us this way - apparently Japanese women who eat a healthy diet suffer none of the symptoms we westerners do, but that was a few years ago I read that and whether they do now I don't know. Suffering symptoms is due to hormonal imbalance so they say and we need to bring the body back in balance, but how is the big question. I get regular emails from a doctor and he says good food, water, the right amount of sleep, exercise and keeping the stress level down with meditation or some other similar form of relaxation is the key - very difficult in this world and also what is good food to one can be poison to another - I read all of Dr. Peter D'Adamo's blood group diet books and he is right except when you have a father with O+ blood and a mother with A- blood and you are O- like me, it is very difficult to follow the blood group diet. I was tested by a kinesiologist before I knew my mother's blood group. I knew my father's because he told me often. The kinesiologist said I tested for food more of A blood group than O and she asked if I was sure I was O blood group. I said I was and she asked what my parents were and I said I didn't know my mother's but would try and find out. I did and found out she was A - interesting, but complicated as we all are!
I followed that diet for your blood type, and it made me ill...
But in menopause trying to get things back in balance is tough....Just have to eat as good as you can, and rest well etc....(even resting well is hard at that time)...Eventually things come around again....Its a big change in your body with hormones...for some its a little easier than it is for others...I think around these times of hormonal changes, is when people can get other stuff...I have a friend totally a health nut...eats the best of everything, meditates etc...takes super suppliments...has a dry sauna in her home(has now had cancer twice)...Been health conscious since the 1970's....Who knows? Lots of stuff is looming and hereditary...
BelgiumK Menopause: went to the gynecologist thinking my cognitive issues, muscle aches, and extreme fatigue were menopause related. My GP referred me to a rheumatologist who ran a battery of tests confirming 'mixed connective tissue disease'.
Im glad you said you saw a gynecologist, because seems regular GP don't think menopause stuff even happens that way...unless its a lady GP...So much symptoms cross over...and hormone times of life seem to bring it on...Good they ran lots of tests to make sure...
My rhumey runs more with the virus idea..
I tend to think hormone and bad stress...and something looming in the wings DNA wise...My rhumey never even asked me about menopause..or stress levels in my life...Just hereditary questions and if Id had a virus or not. I once was around a chemical called malathion for a while, and its pretty bad (I didn't know)...its a bad chemical garden bug killer..banned now
Just read ur comments. Only problems I can see with what you are trying to do is . A lot of the people who are suffering have relations that didn't know they had Lupus, Can't get a confirm diagnosis even thou they got all the signs of Lupus. and even some family don't talk about illness.
A Great idea , but because of the information needed you need to be abele to trace back family medical history and it would help to trace family tree, even working and living conditions . DNA.
I know..i don't really know my relatives all that well...I just wrote on good old facebook, to ask questions to ones I kinda chat with in Oz and UK.. Its a good thing im a chatty girl, and did ask questions about some relatives of Mom and Dad...I never met any Grandparents, so I wanted to imagine them in my mind, so asked lots of questions...
It would be near on in possible for me to pin point my diagnosis had butterfly rash most of my life , never took any notice of it.
suffered with chest ,muscle pain all my life since childhood .
couldn't take tablets until in late 20's unless they were crushed and then still had problems swallowing them.
tested in 2000 and just found out in last fortnight that it was a positive
result for lupus by chance, on a print out to take up to AAU dept. at Hospital.
Father side wouldn't even speak to answer yes / no to if father had suffered with an illness when brother was seriously ill with childhood illness and Dr needed to know.
So what chance would someone in my state have trying to pin point or trace back.
Maybe say you had symptoms as a child with butterfly rash...
You could probably ask the same question of any autoimmune disease. I have no idea why my body decided to turn against itself when I developed Graves Disease between 17-19. I can't pinpoint exactly when it began because it was so subtle at the start. I must have had some sort of predisposition to this sort of illness but I think the trigger was stress - two grandmothers died in quick succession and I was doing my A-Levels at the time.
I had good health for a good number of years and then developed Raynaud's in my 30s. Initially I thought nothing of it. I was diagnosed last year with an overlap of Scleroderma and Lupus. Think stress may have been a contributing factor in developing this new illness. (I consider myself quite healthy for the time being!)
This would be such an interesting survey! My father had late late onset RA so I guess the hereditary element was there. My SLE had a very clear onset following a severe reaction to Penicillin in 1999 with CNS involvement and Vasculitis followed immediately on withdrawal by septic shock during which I arrested and ended up in ITU. The joint pain and hypocomplementemia started then and have continued for 26 years!
your scaring me about the penicillin...Ive always been able to take the stuff, but just had my first reaction to macrobid...and a slight reaction to amoxicillin...The antibiotics can even make your joints ache...
Im wondering if maybe cause I was on plaquinil, and rhumey has taken me off ,if why im reacting to antibiotics now? I don't even know what plaquinil does in your body, or how it works..I know I never had any thing in my nose to blow, when on plaquinil!!!! Sorry to trail off there, but one thing leads to another often...
I didn't mean to scare anyone about penicillin. It's such an effective antibiotic and I had been on it IV for 5 weeks. As my temp rose in protest to the drug, the docs increased the dose to counter the presumed infection. My WBC had fallen dramatically so I had no defence when they worked it out and stopped it so abruptly hence the Septicemia. It wasn't a usual reaction. Why have you stopped the Hydroxychloroquine? I would love to but my Rheumy said it would be the very last drug to be stopped 😕
Oh my rhumetologist is a bit of a smart arse...I asked if we could lower the dose, and he agreed (its written on the bottle)...6 months later he got all mad about it, and said you may as well not even be on it! I see him in July.. He is so back and forth on stuff...
An internist told me I was on such a small dose of prednisone, it couldn't possibly be doing anything. I guess he was wrong, as I had kidney failure within months of being taken off it.
ya and my smaller dose of plaquinil changed my ANA tests and inflammation to negative and below 1, I think it was...so how is that not doing anything?
I recently asked a gp how you know if youre having kidney problems with lupus? He said, "you don't, you just die"...That cant be true...This gp was an older doctor too,..been in business for years...
My daughter was diagnosed with under active thyroid when she was 19, and then when she was 21 she had to have a hepatitis B vaccination for her job. The lupus symptoms (Reynauds, joint pains, bladder issues etc) started after that.
It was only recently we discovered that there is a recognised link between the vaccination and lupus.
so an autoimmune set up with thyroid....and she is/was in the younger child bearing age years, and a hep vaccine...WEll some vaccines are a touch of the disease , I think. I kinda can see that, very interesting...very sad though...
For me - it's called "genetics." My father and his family. I am female - diagnosed 4 years ago. I am 71. I was very healthy up until that point. I cut my leg one day and couldn't stop the bleeding - February 2010. My labs were topsy turvey. Had them 6 weeks prior - everything was great. Had a bone marrow biopsy October 2010. Diagnosed with low risk MDS. Things got worse. Every ANA was positive. Finally got the word in May 2011. SLE. Blood clots in December 2012. Postive for Lupus anticoagulant. I am Caucasian...and too old for all of this! Statistically, I am in less than the 1% for my age, my race, etc. How lucky can one get? ITP causes continuous staph infections from cuts. Life COULD be better! Today is our 25th wedding anniversary - and I am still surviving!
I think I know a lady had same thing...well at least she had lupus that affected her blood...This lady was a professor at a university, and the students just loved her, & she gave lots of herself, but I think some of her teaching was controversial or something....Soooo the faculty turned on her, and then she was layed off...Then pretty quick she had lupus...
I win the same lotteries as you tennissenior...lol
I was diagnosed the first time I walked in the health clinic door but the residents said nothing related to cause. I have a cousin who has had mono which I understand can be a precursor. I am a fairly high strung person and was starting my second semester in graduate school but I had just returned from winter break. It seems to me that most major illnesses come on after or with stressful life events. The body must somehow not be working efficiently during stressful times. Or maybe, it loses it's off switch in the case of lupus.
I'm sure a questionnaire or study could be designed. What is the question we are asking? We would have to try to prove or disprove something.
I believe that my generally high strung personality, plus getting set up at a major university, in a new town. I keep things to myself and attempted to get along with roommates but that didn't work out too well. We continued to room together for the 2nd semester. I did my share but rarely socialized with them. I am female, was 23, a typical age of onset. The only other health issue that I have is hay fever type allergies. My parents both had osteoarthritis. My mother had it early. She complained of traveling arthritis when I was in grade school. I have wondered whether she had a slight case of lupus that was never diagnosed. My sister doesn't think so.
Yes Fighting...going to school and living with others is majorly stressful ! Then exams etc...I been there done that one...long time ago, but I remember...Yes, maybe Mom did have lupus, because so many don't seem to be checked for it when they have joint pain...
well I've got one now, just found out that after test in late 90's the test I had was positive for Lupus. It took 15 years to find out that. I have a new test with a new Dr. to find out what a new Test would say. Surprize I no longer have Lupus all my Blood Tests come back Normal. Like I said to GP " it took 15 years for the consultants to find I had Heart Spasm's and Unstable Angina after Heart scans, ECG and every test except a Anigagramme. So what's chance of blood test coming back normal."
She said well we would have refer you to someone to treat you if you was positive. My Answer " what the difference would they do with treatment. They only can do is Pain management"
Well this is one that we class as ' We Had, We Suffered, We Conquered '.
Nothing surprises me anymore...I had a test for RA back in 2008, because I had back issues...I get all my test results, given to me (and now online)...So...I had a speckly ANA 1:160, but no body said anything..(it said to further test, but no one did)...That's not a very high ANA, but its kind of cusp, I think....I didn't have any joint pain I don't think, so maybe that's why no further checking.....(but he could have told me what the positive ANA meant..or could mean...and to keep an eye on it) He was an about to retire GP....anywho 4 years later things did start to mildly happen...I mentioned that to my new gp, in a new town...I said one thing called ANA was positive, but other test was negative...So...then I was tested again etc etc..like 5 years later...BUT, if I did have lupus in 2008...how come I never got the Norwalk virus from my Mom? I was her caregiver....everyone else in the house got it, but me....(They released her from hospital too soon)..
Paul has promised to do this survey in the very near future...so it will be interesting to see what comes up. I forgot to ask if people had any pre autoimmune stuff (before lupus I mean)...I got hypothyroid around 40...
Every time we don't say NO, and keep frustration in, it is as if accepting another…ulcer!
Btw, i love your thread and i have always being curious about the etiology/the causes of the disease! I am a statistician and i can produce a word cloud after we collect responses! Then, we can send this to researchers who in my opinion underestimate/underinvestigate some of the causes (such as stress).
So, here i would add the climate: i am born in Greece and several times in my life i had to reside in London. Whenever that happened, my flares (always occurring in spring) were worst than when i spent the year in Greece.
I read some papers on the matter and it seems that precipitation, strong winds and barometric pressure play a role.
No matter if i am not stressed now, i add a stress to my body which is the non appropriate weather!
I think my was trigger by pregnancy. That is where it all started. Mine is apparently undifferentiated connective tissue disease but it always says lupus in brackets on my notes and one rheumatologist described it as ' not full blown lupus' so i,m presuming it is early stage lupus. I had my baby 16yrs ago and didn't go to drs with problems until about 7yrs ago but I can relate a lot of stuff now to when or right after I had given birth but I didn't know there was anything wrong at the time. i'm nearly 48 now.
Ya ,hormones again I was having a hormone time too, but they seem to dismiss menopause for some reason...(when actually your hormones are up and down)...
I've been picking up on a lot of people's tales of woe starting at menopause - I expected things to settle at this stage but, after many years of fairly steady and unremarkable lupus, things started to go berserk age 46 and haven't settled yet (now 48). I'm not even noticing signs yet of impending menopause!
ya, well Perimenopause is a rough time too....its can mess up your sleep pattern, that can sure mess up hormones... Perimenopause can make you more irritable than you can ever imagine...Weight gains...mess with your thyroid etc etc...
My friend got really bad arthritis around perimenopause time, but I don't think she has lupus...She is eskimo, but bet no one has thought to test her (they say more first nation, Japanese, and African people, Chinese, have lupus more often for some reason)...I don't talk with her anymore, but bet she be afraid to be tested...Don't think she has much stress in her life she is pretty spoiled by her hubby...She likes booze, and I often wonder if that can make your body more acidic...maybe setting you up for arthritis? (Just my theory)
I was working in a hospital and came down with a one day achy flu which I dismissed since I didn't have a fever and kept working. A few weeks later I was reading a book outside for hours. When I got up to leave, I was nauseated and feverish. I couldn't make myself eat and lost 35 lbs in a couple of months. A few months later, I got stuck in the sun with no shade, no sunscreen and no way to leave on my own. Three days later I was burnt to a crisp and I couldn't move my elbow because of the acute pain and have been in pain ever since. Since I was low ANA or no ANA it took me 7 years to get plaquenil.
I live in the US, but am from Northern European, Scandinavian, and British Isles background.
Wow! AnnNy, does your ANA show up now at all? or anything else? I cant take much sun or heat, but im pretty fair skinned...Ive had some odd things happen when ive been caught out in the sun...like my stomach really bothers me...and I feel really tired, but Im never sure..I once was out in the sun on a beach walking with my daughter, and I did ok...I was on plaquinil then...I have the ANA thing...and inflammation that shows up...Its a tough one lupus...
After 7 years of flares like that I finally find a rheumy who decided to put me on the plaquenil and I stayed on it for about 7 years. I got into an almost remission, so I was doing pretty well, and rheumy thought the pain that the plaquenil didn't touch was fibro. Then I went to another rheumy later and out of curiosity, she put me on 3 weeks of prednisone and the rest of my pain went away. Then I started to get some mild chest pain and put on another term of prednisone. Then I got severe pericarditis like chest pain, so went on Methotrexate. This rheumy didn't do anymore ANA tests. I stopped the methotrexate because of fatigue. But later in the summer after two days hanging out in the sun got quite sick with stomach pain, fever, severe brain fog, seizure. But no ANAs. I had high SED rate and CRP. I had to leave all my doctors since they were blowing me off. Went to a rheumatological center. Still ANA negative, but I'm back on plaquenil and prednisone. I think I may also have seronegative APS, but although they believe in ANA negative CTD, they don't believe in seronegative APS. Right now they are saying it is UCTD. I'm getting towards 40 years of this. I'm fair skinned, too. A very Scottish/Irish complexion. like my mother.
Definitely something going on there....They should put you in a study group...They specialists seem to get weird if they cant fit a person into a category...My Mom is from London...and she was darker skinned, with hazel green eyes...My Dad is Yorkshire,..he has the blonde hair and blue eyes...They both could brown in the sun....NOT me....Im white or red....My daughter got my very fair skin too....Im a little darker as ive aged, but not much...Way back in my family might be some welsh, French...even German, but way back there....My Mom didn't like my white skin...she use to send me to tanning booths....I don't freckle, only on my face a bit (but im getting the odd age spot ;( Its my Dads side the only place I can find anything autoimmune, and that's RA in my Gran...Before Dad died they thought he had fibermyalgia (but everything was shutting down on him)...I have a cousin that had thyroid cancer, but that's cancer...It did get her in the thyroid...
Yes mine started like a flu ,er visit showing high ana and low wbc high stress at work and premenopause it has been three years on plaquenil,prednisone with sweets syndrome lesions on my face,scalp and neck no genetic link I know of except my maternal is 1/2 American Indian not sure if a link or not lesions on dapsone and colcrys to keep them at bay
stress and hormones sure seem to play into it...Then seems virus creeps in at the right moment...or wrong moment....its a tricky disease...mysterious like...Like they say mimics....I feel fine now.....but I'm still being monitored....and my thyroid is moving about again...it stabilized for another 1 year period....Menopause for me i think, sure didn't help matters....
There was one period of time where i did feel something like that...It took me all day to be able to go out to get groceries(I'm on my own)..6 pm at night and id be sort of ready, and I was lucky there was a shop near by...I remember being real stiff in the mornings and hard to pull myself out of bath tub too type thing (muscle weakness)...Im ok lately....so far
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