User Tag List

Likes Likes:  0
Page 1 of 9 123 ... LastLast
Results 1 to 10 of 82

Thread: ?Limited Wegeners

  1. #1
    Join Date
    Mar 2010
    Posts
    170
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default ?Limited Wegeners

    Just thought i would let you know i received a copy of the urgent referal letter my rheumy sent to the ent specialist, in which he is currently ? asking if i have limited wegeners as i have a clear xray and kidney funtion is ok but i do have a trace of blood in my urine. A mistake he has made on the referal is saying my RF is neg when in fact it was positive as i have a copy of it from him!!. He also say that i have had a ANCA test positive twice with a peri nucuear pattern with positive pr3 antibodies. Does anybody else have a positive RF?

  2. #2
    Join Date
    Mar 2010
    Location
    Western Washington
    Posts
    162
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    RF - Rheumatoid Factor.
    When I first got sick in 1990 my RF was very high, so my GP diagnosed rheumatoid arthritis.

    I think a positive RF indicates inflammation somewhere in the body.

  3. #3
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Yes, I had a positive RF that increased between the time I believe I first started flaring and six months later. Very common to have this with postiive c-ANCA and P3. You may also see a positive SED rate (also called ESR) and positive C-reactive protein.

  4. #4
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    RF is not a very useful blood test--too many false negatives and positives. A history of malaria will often cause a (+) RF, for example.

    I haven't heard that it indicates inflammation, though.

    Many people with autoimmune diseases either have a (+) RF in the beginning or they develop one. No one knows why. Unless you have signs/symptoms of RA, it's nothing to worry about.

    My RF was (-) but became (+) since I was dx'ed with Wegs.
    Last edited by Sangye; 03-30-2010 at 02:30 AM.

  5. #5
    Join Date
    Sep 2008
    Location
    Birmingham, England
    Posts
    2,801
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    It's that expression "Limited Wegener's" again. I really don't agree with it. As far as I'm concerned everybody's case is different and some are affected more than others, but things can change very quickly!

    When does Limited Wegener's become Wegener's Proper? Kidney involvement? Lungs? I pity the person that has every symptom on the list!

    Gripe over!

  6. #6
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Kidney involvment, as I understand it, Jack. I was told by my rheumy that it goes from "limited" to "wegeners" when the disease has affected the kidneys (even if nothing else is affected). It really is a "term of art" that doctors use, and mine certainly never tried to say that I couldn't go from "limited WG" to "WG" at the drop of a hat. That's why I have bi-monthly urinalysis.

  7. #7
    Join Date
    Mar 2010
    Posts
    170
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you all for your replies, yes i knew that RF factor dosen't have to mean you have RA the rheumy told me that himself, yes i have a high ESr
    crp and, ie imflamation. What makes me laugh if when he said it was neg and it was him exspaining to me about a positive result. I shall tell the ent specialist when i see him, still wondering what he meant by when he said did i smoke or if i ever did?.

  8. #8
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    A study was just published that examines whether there are two types of MS. It would be interesting if there turned out to be two types of Wegs. Sure seems like it, since the longer one has "Limited Wegs" the less likely it is to ever develop Unlimited Wegs.

    It could sure help us know which drugs to use, too. The incidence of MS is much higher than Wegs, though, so the likelihood of us getting this type of research is low.

    Scientists find there may be two forms of multiple sclerosis – Paging Dr. Gupta - CNN.com Blogs

  9. #9
    Join Date
    Jan 2010
    Location
    Hoboken, NJ
    Posts
    1,425
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    That's interesting, Sangye. My doc seems to think also that the further away you get from original diagnosis without kidney involvement, the less likely you are to get it, and that with kidney involvement it's more like you can get any other issue at any time. That's what he's seen in his caseload anyway.

    Yes, I can't see anyone pushing the envelope for new discoveries for WG. Talk about a small sample size!

  10. #10
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Yes, that's what my Wegs doc told me last year. He said he'd be shocked if I ever developed kidney involvement, after having only pulmonary involvement for 4 yrs. He had one patient who suddenly developed kidney involvement after having Wegs for 9 yrs, though. She's also African American, which is already a rarity with Wegs. He said he couldn't believe it when it happened.

Page 1 of 9 123 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •