The Lupus Game

Discussion in 'Fibromyalgia Main Forum' started by ForeverFlaring, May 13, 2003.

  1. ForeverFlaring

    ForeverFlaring New Member

    Hi all.

    My new doc just called me with results from my bloodwork and said he wants to make a preliminary diagnosis of Lupus.

    I do have a red rash across my face and have had it for several years.

    My ANA this time around was 1:80 a year ago it was 1:180.

    Does anyone know if activity levels can aggravate the condition to make the ANA results higher? I was working when it was 1:180.

    Anyhow..I was told before I definately had Lupus and then was told I definately did not by a rheumy. Now the new doc says yes to Lupus and is sending me to a Rheumy for confirmation. Anyone else gone through this?

    In a way I am a bit happy if it is Lupus because that is just another diagnosis to add to my Social Security case.
  2. FrustratedSoprano

    FrustratedSoprano New Member

    Don't know what to tell you. I have positive ana, and I know the reason they told me for sure that I don't have Lupus is the fact that my double stranded dna test (not exactly sure what it is) came back negative (and I am told is always positive in Lupus) I'm assuming they did the double stranded dna bloodwork too????

    Sorry I'm not anymore help, but I just wanted to share what I did know, and give you a big cyber hug ((((((()))))))

    Wish we could all get correct dx's quickly and easily, but alas, tis not to be.
  3. stillfighting

    stillfighting New Member

    Wow--this all sounds very familiar. I haven't had a test for Lupus in a while, but have had the rash and have problems with sores in my mouth (on top of the usual fibro stuff). Early on, I had a positive ANA (my doc asked if I might have been exposed to gonnorhea--NOT), but this hasn't come up in at least 10 years. It just goes to show that you have to keep on top of things, since the docs don't always know and tests can be screwy!
  4. sharie

    sharie New Member

    Just wanted to let you know that I do have lupus, for about 16 years. My most recent ANA was also 1:80. I know that in the past it has also been 1:1600, and all over the place. When I was diagnosed, my platlets were also very low, enlarged spleen, rash on my fact it is always with me and gets redder the more tired or stressed I am. Also I have the lupus anticardiolipin antibody. If you have any other questions I can try to help.
  5. 2girls

    2girls New Member

    but the last ENT I visited on Friday strongly suspects I have Lupus. He has hooked me up with an immunologist - appt in early July. My primary doc disagrees. I have had the mouth sores, burning mouth for almost a year now. I have also recently developed a rash on my hands that will not let up - I think it was a reaction to the sun two weeks ago.
    I was told by the ENT that it does take a while to get a confirmed diagnosis.

    good luck,
  6. tansy

    tansy New Member

    My DNA binding and ESR were high but the seriological test for lupus was negative.

    At the time a few others with CFS were found to be the same.

    The high dose steroids I was given made me so much more ill but did ease my joint stiffness.

    I think in my case my immune system is as loopy as my brain and just goes into overdrive sometimes


    Does anyone think these initial tests indicate the immune system is trying to get at a virus or similar?


    [This Message was Edited on 05/13/2003]
  7. jka

    jka New Member

    i've had lupus for 16years now.i was really lucky that my internest had just been to a conference on lupus.when i came in with the rash on my face,swollen hands & feet,joint pain and very very tired-he knew right away.he wouldn't tell me any thing until the test came back-which that many years ago it took 3 weeks.i read alot of med books and figured it out myself.when hubby and i came into his office he couldn't even say the word without tearing i said it.i was really sick back then.almost completely bed ridden with a 3yr was tough the first few years.i did alot of research and found natural things to help.i now work part time-he never thought he would see me beable to do that.but from the beggining i decided I WOULD BE IN CONTROL.not my illness.if you are diagnosed-please keep a positive out helps doc says i'm his pride and joy because i never should have gotten to where i am today.even the rhumy i go to for fibro was shocked at how well i was.he said i shouldn't beable to live like i do with how sick i lupus is still active and probably always will be.the main thing is stay out of the sun.if i'm outside 10 min without a hat and sunscreen i feel like someone is pouring acid on my skin.i'm praying for you to NOT have it.this illness isn't something i would wish on anyone.
    kathy c
  8. sunnyDi49

    sunnyDi49 New Member

    I once tested positive for Lupus via blood testing, and then later, tested negative. My doc told me that's how Lupus tests go.

    I have FM, CFS, IBS, MCS, and most symptoms of MS, with occasional positive tests for Lupus. I say this because I was curious about applying for disability. For now, I'm able to work 40 hours a week.. barely. I go to bed early each night and rest and sleep alot on the weekends.. so I'm able to keep working. But I fear that one day I won't be able to keep going. Does it take a year or two to get on disability, like I hear it does? Can you give any tips as to how to get started, etc.?

    I appreciate any info! God bless!
  9. momofafibro

    momofafibro New Member

    I also have lupus. Don't let a doctor that don't understand lupus tell you that just because your (ds) anti- DNA is neg that you don't have lupus. It is not so. My ANA is always on the low side and my anti DNA is always neg. But trust me I have one of the more severe cases of lupus. Blood work does NOT always show it.
    Anyone here that has the problems of fibromyalgia and has a possitive (either high or low) ANA needs to be seen by someone who understands lupus. Just because they are a rheumatologist does not make them an expert in lupus. This is why it takes us so long to be diagnosed. I know from personal experience that they are meds that will help some of our symptoms. It frustrates me that some people may have lupus with their fibro and are not getting the meds that could and would help them.
    I'm sorry. I don't mean to get on my soapbox but my daughter has fibro and I'm convinced she has lupus also. But no doc will dx the lupus because her blood tests are neg. She has the red mask on her face,mouth ulcers, odd rashes along with other things that could be lupus or fibro.
    Just don't ever give up on a diagnosis of lupus if you have symptoms of fibro and you have even a slightly raised ANA.

  10. sharie

    sharie New Member

    I'm just curios what type of meds are good for lupus with fibro. I have had sle for 16 years and was recently diagnosed with fm too(secondary to lupus). My lupus has been relatively inactive for quite sometime and my rhuem. wants me to start on plaquenil.
  11. ForeverFlaring

    ForeverFlaring New Member

    Thanks all. It helps to know I am not the only one riding this Lupus diagnosis yo-yo!
  12. FibroNan

    FibroNan New Member

    from positive to negative. I have already been diagnosed with FMS and he drew blood at my last visit. I go back in about a month for those results. My Rheumy keeps bringing up Plaquenil but I have heard that it can be dangerous to your eyes. How many of you take Plaquenil? Does it help you? Do you have any adverse effects from it?
  13. lorgirls

    lorgirls New Member

    I wonder if all this isnt just the early stages of Lupus or MS. Lupus runs in my family among other autoimune problems.Ive been noticing that alot of people here have Lupus. So far Im neg.but several docs have suspected it.
  14. kadywill

    kadywill New Member

    I took Plaquenil in the mid 80's, but my Opthalmologist saw changes in my eyes, so I switched to other drugs for awhile. The drug of choice for my docs has always been Prednisone or other steroidal anti-inflammatories, but now my suicidal tendencies which these meds cause are making it an unwise choice for me. I saw my Rheumatologist last Friday and he drew seven more tubes of blood. Because my pain is nearly nil while on steroids and is so severe when off them, he's thinking about Methotrexate or Imuran again. Because of my Cirrhosis (non-alcoholic) I have to be VERY careful and must be checked monthly. We've come to the conclusion that my liver was damaged mainly be high amounts of lipids being stored in my liver, because as soon as I begain a statin drug for my chol/trig, my liver enzymes and my lipids ALL were within normal limits for the first time ever! My doc wouldn't have believed this because my liver biopsy showed definite cirrhosis; he even sent my results to a UNC panel of Hepatologists for further review! My point is, meds are crucial, but very dangerous.
    Lupus is a disease which can be managed with the right protocol....FINDING that protocol is often very difficult.
    Good Luck!
    p.s. my ANA fluctuates between 1:80 to 1:1600 homogeneous pattern