User Tag List

Likes Likes:  0
Page 2 of 2 FirstFirst 12
Results 11 to 14 of 14

Thread: Newly diagnosed -or not sure what is going on.

  1. #11
    Join Date
    May 2013
    Location
    Australia- Northern N.S.W
    Posts
    171
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Deanna, I hope things get a little clearer soon, Wegs does what it wants, when it wants, everyone gets something a little different, it can sit there and smoulder for a long time, or hit you hard and fast, your infection rate is the one to watch (CRP and ESR), I had a couple of biopsies done, no confirmation of wegs, everything else pointed to wegs, so my rheumy has treated me accordingly. Still waking up every day, a big thanks to all my doctors, and my lovely wife and kids, good Doctors and family support is the best medicine........

    All the best....Woz.

  2. #12
    Join Date
    Mar 2016
    Posts
    13
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Alysia, that is interesting about the hemoglobin, this last reading was normal but my RBC have always run slightly under normal. I also have pain when I get out of bed in the am, joints hurt particularly my ankles. I actually ache all over. I was checked for RA and it came back normal. Could this be part of WG? Does the level of PR3 indicate whether it is smoldering, as in flare and not active. I would think a PR 3 of 47 would be indicative of active. Over 30 years ago I was diagnosed with Raynauds and it was not associated with any auto immune. Just an isolated incident. I have been dealing with it all these years. I don't think I have Chron's as I recently had a colonoscopy and it was normal.
    I feel better knowing I am seeing another doctor. The one I saw was not very helpful. I will be in a large teaching University Hospital. Actually a place I used to work as a nurse. We had patients come from everyone to see our doctors. I know someone will find an answer. The waiting is the hardest.
    thanks to all for their support. It is what I need now.
    D

  3. #13
    Join Date
    Nov 2015
    Posts
    373
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default

    Glad to hear you have an appt soon at a teaching hospital. My PR 3 was 9.9 with the positive CANCA and eye and lung involvement and they started treatment based on that data I was at a teaching hospital but have an appt at MGH in Boston coming up - want to make sure we are doing the right thing as far as the treatment plan.

    I am also a nurse ��

  4. #14
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by deanna View Post
    Hi Alysia, that is interesting about the hemoglobin, this last reading was normal but my RBC have always run slightly under normal. I also have pain when I get out of bed in the am, joints hurt particularly my ankles. I actually ache all over. I was checked for RA and it came back normal. Could this be part of WG? Does the level of PR3 indicate whether it is smoldering, as in flare and not active. I would think a PR 3 of 47 would be indicative of active.
    D
    Hi. I don't know to compare the values of your PR3 because I live in Israel and we have other scales. what I can say is that when I had the biggest flare that almost killed me, the numbers of both C-anca and pr3 were very very abnormally high. in remission both were negative. when out of remission pr3 was first to indicate. after rtx pr3 is the first to become better. I think that at least for me, the numbers are in a correllation with flares/ smoldering, remission. try to make a diary of symptoms at any level of pr3 etc, to get to know how it works in you.
    my eye dr. just told me yesterday what my wg dr. told me a month ago, that the wg cases, like mine, in which there is an activity - but not as dramtic as in the kidneys, or when the lungs are flaring bad, or with dramatic blood tests - the docs scratch their heads, not sure what to think and to do.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

Page 2 of 2 FirstFirst 12

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
  •