Lupus Triggers

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Ashlexx
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/20/2009 10:56 AM (GMT -7)   
Hi my name is Ashley and I am a senior in high school. Im in Science Seminar, and I am doing a study on Lupus Triggers. Ive created a survey to ask questions concerning ones background, environmental, lifestyle, and stress factors. Im hopeing that the results will show common characteristics. Therefor having a better understanding of what triggers Lupus. The answers will be confidential and the will be analyzed as a whole not individually. If you're interested in helping me out, please let me know. I would really appreciate it!
 
Thank you for your time.
Ashley
 
 
 
..................................................................................................
Thank you very much for your input guys, I really appreciate it. here is the link to the survey. You HAVE to be  18 YEARS OR OLDER to take this survey. If you know of a site where I could get more feedback, could you give me the link or copy and paste this link there. I could really use all the help I can get. My project has to be done by Christmas break. Thank you.
 
...............................................................................................
Thank you for your support. When my project is final, Ill be sure to post the outcome. I've received 6 responces so far. Thats a good start but Im pushing for 100-200 responces. If you know of a way to help me spread the survey at a faster rate please let me know!!!
Thanks, Ashley
.........................................................................................
Again, Thank you guys for your  support. Im at 18 now, and im starting to get really stressed. Its crunch time, and I don't have near the results I need. If you have ANY advise, as to where else I can take my survey, or promote it. All help is appreciated. I have 3 weeks before I have to have my results in, analyzed, and a research paper written!!!
 
Thanks, Ashley
Please take the time to take my survey. You must be diagnosed with Lupus, and you must be 18 years or older to participate. Thanks!!!
Ashley

Post Edited (Ashlexx) : 12/2/2009 10:45:11 AM (GMT-7)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 11/20/2009 10:05 PM (GMT -7)   
Ashley,
 
It is great that you are endeavoring to determine triggers for lupus.  There are many known triggers but in any individual case the trigger is not known.  I suggest that you read a book called " The Autoimmune Epidemic" and you will get a good idea on how AI diseases work...what is the underlying cause and what triggers the autoimmune response.
 
Most researchers feel that those of us with an AI disease have a set of genes that predisposes our immune system to a disruption and that something triggers a misdirected response on our body.  The problem is that there can be many triggers over a long period of time (in some cases) and then a final trigger causes you to become symptomatic.  In my case, I think the disease was lurking for at least 15 years before I became symptomatic.  At the time I became symptomatic there was nothing that seemed to be a trigger.  Remember that a trigger is different from a cause when talking about an AI disease.
 
When I flash back to that period of my life I was under a lot of stress over a period of years with no other health problems, illnesses, or anything else.
 
Here is what the Lupus Foundation has to say about causes of lupus:
 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/21/2009 12:05 AM (GMT -7)   
I don't think any of us knows specifically what triggered our disease though given my exposure to mono right around the time my life hit the fan I suspect it was a virus for me. I just know that a lot of different things can trigger lupus and often no one knows the cause, actually usually no one knows the cause.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/21/2009 6:43 AM (GMT -7)   
Hey, I will give your questoins a shot. You can get my email by clicking on my name that is in blue on the left side of the page...

Ashlexx
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/23/2009 10:29 AM (GMT -7)   
Bill, Thank you very much for your information. I actually did some reading in that book when I was doing background research on Lupus. The survey doesn't ask for you to tell what triggered your Lupus, it generally asks questions such as 'Prior to your onset of Lupus, what was your occupation?' and 'Prior to your onset of Lupus, what was your dieting Habbits?' Most of the questions are multiple choice. I've also researched other studies similiar to this one, and I hope to improve the study. I know I won't be able to solve the study, but I want to further the research. Thank you for your time, I can really use all the help I can get.
Ashley

Ashlexx
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/23/2009 10:31 AM (GMT -7)   
Redrose77, I know no one knows the actual cause. The point in it is to hopefully narrow the list down to have a better understanding of the disease. Thank you for your time, I really appreciate it.

Ashlexx
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/23/2009 10:33 AM (GMT -7)   
Amy, Thank you so much for your willingness to help. I will post the URL on here, but the site states I have to have at least five posts before I can post a URL. It will be on here hopefully within the next hour. THANK YOU SO MUCH!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 11/23/2009 3:26 PM (GMT -7)   
Ashley,
 
I would be glad to answer your survey.  My email address is bill_simeral@yahoo.com.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Ashlexx
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/23/2009 9:55 PM (GMT -7)   
I put the link on the post, if it doesn't work I will be happy to email it to you.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/24/2009 9:44 AM (GMT -7)   
Ashlexx, good luck with your survey. I hope you receive a lot of responses. I just took it and it just takes a couple of minutes.

Let us know what your results are!
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/24/2009 10:37 AM (GMT -7)   
Hey Ashley...I have a question about the last question...sorry, my brain fog is kicking in but it was somthing about attending college within a certain amount of time before the Lupus diagnosis. In your research have you found that college life could be a trigger? I became a heavy partier when I was in school and I had to withdraw because I missed too many classes to pass...about 5 months after I withdrew from school i started having my Lupus symptoms.


I too am curious as to what the results are! Please let us know :)

Ashlexx
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/24/2009 10:58 AM (GMT -7)   
Well I found research that beleived stress was related to triggering Lupus. We beleive that as a college student you are bound to be stressed. If you are the partying type, you have to worry about keeping up with the other part (homework, passing, attending, etc.) If you are the full on college person your constantly stressed about GPA, essays, impressing your instructers, not looking like a brown noser, etc. Therefore, either way you are stressed in college. So the last question was based on a stress facter. I will definitely let you guys know the outcome. I really appreciate your support!!!

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/24/2009 5:05 PM (GMT -7)   
Hi Ashley,

I took the survey but my occupation was not listed; I teach college plus I'm a scientist and neither of those options were listed. Also, you might want to put in an option to have more than one family member with lupus (I have 3). Just FYI..... :)

And yes, together my jobs can be VERY stressful at times.

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/25/2009 12:44 AM (GMT -7)   
I'm sorry I couldn't do the survey because those questions I could answer had no significance to my case of lupus and the significant questions weren't asked or no provision for a useful answer. A survey is only as good as its questions and the number of people who reply to it. It would be wrong to conclude that neonatal lupus doesn't exist because nobody ticked that box. I guess you just might get somebody replying that a child of theirs had had neonatal lupus.

I realise you are young and trying hard but surely you could have got some guidance about the very complicated area of 'ethnicity'. I am not sure exactly what you mean by 'oriental', maybe Chinese, and does that include people from the Indian subcontinent. What about 'Asian'? My being of Northern European/Scandinavian stock ( of course racially Caucasion ) as opposed to Southern European ( 'Mediterrranean '?), happens to be significant, according to what I have read.
Let people tell you their ethnicity!

My occupation isn't included either but the main point is that stress is stress as it is experienced individually. I have been very stressed all my life but it wouldn't have been revealed by those questions. The problem is that you have decided what is stressful. Financial problems can be a major factor in stress but being well off certainly doesn't mean there's no stress in life.

It would have been much better to make provision for people to tell you what they think might have triggered their lupus which would have included questions about diseases and other medical conditions, medicines in addition to hormonal intake, and considerably more accurate questions about sun exposure which is far too vague. For one thing, who has no sun exposure whatsoever? Some UV comes through glass. I wouldn't find it easy to estimate how much sun exposure I get even nowadays when I avoid it as much as possible. Most people have a very shrewd idea of the possible factors because it's something we all think about.

I decided to make all these points ( no email addy for you) because if I were judging a science fair I would give top marks to people who realised the limitations of their investigations. Method is a very important aspect of science. If you read research papers you will often see comments on the limitations of the studies which throw the validity of the findings into doubt. In your case, you can point out that the number of participants is very limited compared with the numbers that have the three forms of lupus. By the way, drug induced doesn't count as it is a lupus like illness which by definition goes when the offending drug is withdrawn. If it doesn't, it would be clinical lupus apparently drug triggered. Neo natal doesn't count either because it is not clinical lupus. It goes within the first year of life as the auto antibodies leave the baby's system.
The participants will have been limited to a few of those who use online lupus support forums and thus not a cross section of those who have lupus. It's reckoned that African Americans suffer lupus 4-5 more than 'white' Caucasians, but that is certainly not reflected in support forum participation. Those who are living well with their lupus tend not to participate in forums because they haven't the time and have no problems. Other limitations of your survey have already been touched upon.

I hope you will consider these suggestions to turn what is so far rather lemon like into real lemonade.

I truly would like you to do well - good luck !
BB

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/25/2009 1:59 AM (GMT -7)   
I took the survey and assumed onset meant start of symptoms and not diagnosis. Onset was in my teens diagnosis was nearly 30.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 11/25/2009 9:13 AM (GMT -7)   
Ashley,

Your survey was fine. All surveys are limited in scope and none are perfect.

Asians are considered those of mongolian race...those from most of the far east from China, Korea, Japan, SE Asia and some from Central Asia. Most Indians are actually Caucasian so they are Asian in origin but not in racial classification. The ones you used are standard racial classifications. There is discussion over racial classifications but here is what wkipedia says about racial classification:

[edit] 20th century

The 20th century racial classification by American anthropologist Carleton S. Coon, divided humanity into five races:


Before the Pleistocene
After the Pleistocene
Caucasoid race
Congoid race
Capoid race
Mongoloid race
Australoid race


In his landmark book The Races of Europe, Coon defined the Caucasian Race as encompassing the regions of Europe, Central Asia, South Asia, the Middle East, North Africa, and Northeast Africa.[31]

Coon and his work drew some charges of obsolete thinking or outright racism from a few critics, but some of the terminology he employed continues to be used even today, although the "-oid" suffixes now have in part taken on negative connotations.[32]

In the 21st-Century, Coon's role came under further critical scrutiny when Prof. John P Jackon Jr, noted that the American Coon, "actively aided the segregationist cause in violation of his own standards for scientific objectivity."[33]

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 11/25/2009 11:44 AM (GMT -7)   
Hi Ashley,

Bill's right...your survey is fine. I hope I didn't make you feel bad! I just wanted to give you tips for future reference.....I hope that your project goes well and that you get the information that you need!

Best wishes,
JoAnn

P.S. as to the origins and triggers of many autoimmune diseases, you might want to read the article at the following link: www.umm.edu/news/releases/zonulin.htm
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 11/25/2009 2:48 PM (GMT -7)   
Here is the latest from the Lupus Foundation on the causes and triggers of Lupus.
 
 
Other AI diseases have similar triggers and some specific triggers have been associated (but not always proven) with specific diseases.  An example is statin drugs triggering myositis diseases (polymyositis, dermatomyositis, and inclusion body myositis).  It is strongly suspected and a form, statin induced myositis which is temporary, is well known.  Whether or not it triggers PM or DM is still not really proven. 
 
Bill
 
 
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Ashlexx
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/26/2009 10:45 PM (GMT -7)   
Thank you for your imput. I do have guidance, but like me they arent Lupus experts. Although I've done a bit of research, I know I still have a lot to learn. I don't want you to think I just slopped words on a survey, and Im sorry if I for some reason offended you.
 
I will take all your imput into concideration, but the survey source im using may not let me change a lot of things.
 
I do appreciate all the help I can get, because I do want this project to have some kind of significance. I don't want it do be some survey a highschool student slapped together for a grade. I wouldnt have taken this honors course if I were. I hope to go into nursing, maybe even surgery, and this project is my start.
 
Bill again, thank for all your help. You've been very supportive and helpful. Im learning more about this disease everyday, and I wish I would have had more prep time to get the survey questions and background information together. However, like most things in life, I have a time reference and due dates.
 
To everyone who has taken the time to take my survey thank you very much. I really hope more of you decide to take it, I am no where near the respones I need. Thanks.
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