Anyone here have lupus?

  1. I just wanted to know if anyone here has lupus. If so, how does it effect your life, work, etc. Also...do you know of any good web sites for information?

    My doctor is running tests to see if I have lupus...and I am a bit nervous. So far my ANA was borderline positive, Rheumatioid factor was negative, and my lupus anticoagulant was positive. He hasn't run the anti-DNA antibody or anti-SM yet. He just ordered a double stranded ANA to be drawn, but isn't that the same as ANA? I am not very familiar with these labs and have just done minimal research as of yet, so any help would be greatly appreciated.

    Thanks.
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  2. 6 Comments

  3. by   FrankieJane
    By the way...I will be seeing a rheumatologist in September. I wish I could get in earlier, but no such luck. I would at least like to know which labs I should request to have drawn so that I will have some baseline information for the rheumatologist visit. Once again, your help is appreciated.
  4. by   sunnygirl272
  5. by   FrankieJane
    Thanks for the web sites. They are very useful.
  6. by   sunnygirl272
    also try a medscape search
  7. by   hapeewendy
    I was diagnosed with lupus in March
    its all still very new to me
    there are tons of sites on the net, just do a webcrawler or metacrawler search and you will find tons and tons
    some of it scary, some of it reassuring

    about the double stranded DNA test :


    Anti-DNA.

    For the diagnosis of SLE, the most important nuclear antigen recognized by ANA is double-stranded DNA. Antibodies to
    double-stranded, native (nondenatured) DNA, when found in high titer, are highly specific for SLE. Anti-dsDNA antibodies are seen at some time in about 80% of SLE patients, although their levels fluctuate, and antibodies may be absent even in some patients with active disease.

    that is from rheumatology.org
    its kind of wordy but I had the same questions about all the obscure bloodwork they do to investigate for lupus
    as for how it affects me, it depends, If I'm feeling healthy I'm the same old go getting active young woman, but if I'm sick, I feel 95. the major things I have noticed is that when I am sick it takes me a lot longer than most other people to get over it and that sometimes if I am overly tired my joints - specifically in my hands, are very painful, and my hands spasm (great trick at work while charting!) "there is so much paperwork here that it makes my hands shake! no for real it does!"
    just remember that you are in a very preliminary stage of things right now , I had been feeling bad for months before the term lupus ever came up, and the dr's said that the criteria for a diagnosis for lupus are quite vague so you need to have 4 out of the 11 to even get the diagnosis in the first place, nevermind treatment to make you feel better!
    the criteria are listed on rheumatology.org
    on a day to day basis I am unaffected , at least not overtly affected anyway, its a chronic condition , has flare ups like many other medical conditions but I have found the best thing for me is to be educated on the topic (there is such a thing as too much info though, when reading initially I thought that my fate was kidney failure for sure - which it isnt)
    I hope it isnt lupus, but if it is, you'll manage, just another thing on your list to pay attention to, a disease or illness never defines you as a person...just remember that
    and for those people who are ignorant of your symptoms and how crummy you may feel - allow them to be, its very hard to understand why people who "look healthy" are so tired , fatigued and in pain a lot of the time

    Cheers and good luck!
  8. by   FrankieJane
    hapeewendy...

    I have also had symptoms for a long time. If what I am experiencing is not lupus...then I sure hope the doctors find out what it is so that I can get some type of treatment. I have been complaining of extreme fatigue and joint pain for about two years now. My glands are often swollen and sore. For awhile my ankles were terribly swollen (2+ edema). The doctors did a cardiac work-up...and all was fine. They never did figure out what the swelling was from...all my labs were fine too.

    I also suffer from hypothyroidism and endometriosis. My god! I sound like such a mess!

    Anyway, I was about ready to give up on doctors. I actually started to believe that I was a hypochondriac. I was ready to start on anti-depressants as a last resort...hoping maybe I was fatigued due to stress or depression (even though I did not feel like I was depressed).

    I recently had a miscarriage. After I lost the baby...my joints hurt so bad I could hardly move. The doctor was testing me for rheumatoid arthritis and other various things like mono. Just for the heck of it he decided to do the lupus anticoagulant antibody test. He really did not think it would be positive. I know that having the positive anticoagulant factor does not mean that I have lupus...but between that result and my ANA result I now know that my symptoms are not "all in my head". This will sound bad, but I was almost relieved that the doctors found something wrong with me. At least I know that I am not crazy.

    Maybe I will be lucky and I won't have lupus, but after reading information on the various web sites I realize that if I do have lupus...it is not the end of the world. I just hope that the doctors figure out what is going on with me. I just want to know what I have so that I can research it and live my life to its fullest.

    Thanks for responding to my post.

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