I tested positive for HLA -B27

Discussion in 'Fibromyalgia Main Forum' started by GooGooGirl, Aug 8, 2003.

  1. GooGooGirl

    GooGooGirl New Member

    I just called my Doctors office and I tested postive for HLA-B27. Anyone else?? They ran this test because I am having severe lower back and hip pain. I'm off to do some research but any help would be greatly appreciated.
    [This Message was Edited on 08/08/2003]
    [This Message was Edited on 08/08/2003]
  2. ssMarilyn

    ssMarilyn New Member

    I tested positive too. The reason the eye doctor tested me is because I had Iritis, an inflammation of the iris and if you have Iritis, that's a good indication you also might have Ankylosing Spondylitis. (AS). You can carry the gene, but not show the symptoms of AS. You can also pass that gene onto your children and they may or may not show symptoms of AS.

    There is a website for the AS organization and you can get free brochures and info from them.

    Marilyn :)
    [This Message was Edited on 08/08/2003]
  3. GooGooGirl

    GooGooGirl New Member

    The nurse told me to continue the Topamax (which I haven't even started yet because I am afraid of side effects) and to just keep my appointment with the Doctor in 5 weeks.
    She did not seem very concerned about it. I found a good website and I definitely have all the symptoms of it as far as my back and hips are concerned. I guess I'm just glad I know why my back and hips hurt so bad now. Just another thing to worry about now on top of the Fibro.
  4. ssMarilyn

    ssMarilyn New Member

    I don't take anything for my AS. It normally affects men more than women, so if you do have AS, you probably won't become as crippled up as a man does. AS is a fusing of the vertebrae in the neck and back. Someone that has an advanced case of AS will walk with a stiff, stooped forward appearance, like they're walking into a strong wind, and in many cases cannot even turn their head. I was in horrible pain with my back a few months ago, but it's been real good for a long time now.

    Marilyn :)
  5. ssMarilyn

    ssMarilyn New Member

    I forgot to mention that AS feeds on starch, so if you do have it, you really have to watch your diet. I started Atkins in May and not only have I lost almost 30 lbs, but I have had ZERO pain. I eat almost NO starch and absolutely NO sugar.

    Marilyn :)
  6. GooGooGirl

    GooGooGirl New Member

    I will have to make some serious changes in my eating habits. I am mainly vegetarian and eat carbs all the time.
    I'm hoping to get more info from my doctor on this but I don't go back until September 15. I am in such pain with my lower back even if I just stand for 5 minutes. I was washing dishes earlier and I had to lean on the counter as opposed to standing up straight because of the pain. It sometimes feels as if my back is arching. My x rays look normal so I guess that is good. This is all too much for me right now on top of the Fibro.
  7. Sunshyne1027

    Sunshyne1027 New Member

    I looked it up..AS. Not sure what the test you mentioned is for?

    What I read too..I have that sort of pain also. Back pain, pelvis, hip pain. Also read about pain by the heels? Or right above? I have that too. Knees also, pain in mainly thr left one.

    I hate jumping to conclusions, yet you got my mind thinking about it. I will try and bring it up to the doctor though.



  8. Sunshyne1027

    Sunshyne1027 New Member

    You mentioned the pain while standing.. Thats me too.. Especially doing dishes. Within 5 minutes feels like my lower back is going to go out.

    You hang in there. I know its very hard right now.. the pain with FM. Then whats going on now. Stay strong, take some breaks for just you.

    :)
  9. fibrolindak

    fibrolindak New Member

    GooGoo Girl,
    What is HLA-B27? Never heard of it!
    I too have severe back and hip pain, however I assumed it was due to severe Osteoarthritis, which x-rays show I have.
    But maybe that's only part of it. Is this something I should talk to the doc about?
    I'm also interested in Topamax. Is it supposed to help this condition? I've heard that it helps pain, sleep problems, and also promotes weight loss. If it does all that, what a great drug that would be!
    Any insights or suggestions from anyone would be helpful.
    Thanks,
    Linda
  10. ssMarilyn

    ssMarilyn New Member

    HLA-B17 is a gene and they do a blood test to see if you carry that gene. If you test positive for it you might just be a carrier of it, then again you might actually have the condition
    Ankylosing Spondylitis. You can pass that gene onto your children and they may all carry that gene also, but usually only 1 in 4 will have AS. More men than women get it and they get it much worse than we do.

    Marilyn :)
  11. GooGooGirl

    GooGooGirl New Member

    I think ssmarilyn meant to type HLA-B27. Yes, it is blood test that detects a Gene that some people carry that can lead to AS (Ankylosing Spondylitis). Even with all I have read about it, I still don't understand it. I guess I will have to wait for my Rheumy appt to find out more.

  12. Dogtired

    Dogtired New Member

    Hi,
    I was positive for HLA-B27 and diagnosed with Reactive Arthritis/Reiter's Syndrome (in the ankylosing family) 4 years ago (and recently with CFS).
    I could be wrong, but my understanding is that HLA-B27 is a genetic marker that can be triggered by various injuries to the body (food poisoning in my case) and then leads to the development of the disease of arthritis. Only a very small percentage of the population carries this marker and even if you have the marker, it doesn't mean you necessarily get triggered for arthritis...oh the luck.
    Whatever the exact mechanics...it makes life hard!
    I am lucky that I can still work part-time, but it can be difficult and hard to predict when it will act up.
    -Kristi
  13. ssMarilyn

    ssMarilyn New Member

    Actually, I copied and pasted it in from a post above in order to save myself some energy, (and didn't even notice it was wrong). I don't have much these days, and I also quite often fail to spell check myself. All part of menopause and just not giving a rip somedays!

    Marilyn :)