User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 14

Thread: Positive Diagnosis Questions

  1. #1
    Join Date
    Nov 2013
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Positive Diagnosis Questions

    Hi, this is Keith from Jacksonville, FL. I have felt pretty bad for the last few months. Nasal issues and clogged ears (have tubes now) and most recently body pain and inflammation all over. I tested positive for C-ANCA and had a P-ANCA score of 319. It appears as though it could be WG. Doctors want to make sure with a nasal biopsy before they start me on treatment. However, my ENT says he cannot see any questionable nasal tissue to biopsy. Lots of crusting was removed in a prior biopsy to determine that I did not have cancer, but it hasn't come back. Any suggestions to get a firm diagnosis? They did look at my lungs and kidneys and all appeared good there so they suspect "limited WG". Can alcohol or sugar cause flare-ups? Any help is much appreciated. Thanks.

    Keith

  2. #2
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,116
    Post Thanks / Like
    Mentioned
    34 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Keith and welcome,
    nose biopsy can come false negative. I had 2 like that.
    what do you mean by "inflamation all over" ?
    "limited wg" is a "dangerous" defintion, as was in my case (eventhough I had lung-involvement), because there are some docs that think that no-serious-treatment is needed in such a case. remember that it must be treated. in my case i didnt get in the first years immuno-suppresants until wg became more and more "aggresive".
    I hope that you have good docs, who know wg. it makes the difference.
    good luck and update us.
    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.

  3. #3
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,238
    Post Thanks / Like
    Mentioned
    17 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Keith,

    Even though the docs who diagnosed me were not 100% convinced I have wegs, they couldn't provide another diagnosis that matched my symptoms (similar to yours). They decided to treat me for wegs (cytoxan, high dose prednisone, and bactrim) with the understanding that if my symptoms improved, that would validate the diagnosis. My symptoms did dissipate.

    Alysia is correct in that this disease does require aggressive treatment to arrest presenting symptoms and minimize the risk of damage to currently unaffected organs. You or your doc may want to research the Vasculitis Foundation's website for a WG/GPA specialist to consult with. Also, I think there are specialists at Mayo in Tampa-St Pete and University of South Florida.

    Good luck and better health!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #4
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,983
    Post Thanks / Like
    Mentioned
    19 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Keith. I agree with those above. I hate to see someone not get treated because no one is sure they have Wegs. Your symptoms sound pretty Weg-like to me. Which doesn't mean you have it, I hope you don't. I agree with Pete about finding a specialist and I think I saw one listed in your area on the Vasculitis Foundation site.... check this link: VF Medical Consultants . I just looked and saw a pulmonologist on that list at Mayo in Jacksonville, and maybe you don't really need a pulmy, but there might be other good docs there or where Pete suggested.... perhaps that pulmy could suggest a more suitable doc for you. I personally doubt that the VF list is complete and think there must be other good Wegs docs around. And not to say that your doc doesn't know what he is doing, but maybe you need at least one second opinion as to whether you should go ahead and take meds. I think there are some on here besides Pete who did so without a definite dx and it turned out to be the right thing. Good luck, and keep us posted!
    Anne, dx'ed April 2011

  5. #5
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,921
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    My understanding is that the term "limited" is being replaced with "localized". Localized would seem to be more accurate.
    Wegener's (​GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  6. #6
    Join Date
    Apr 2013
    Location
    Orlando, Fl
    Posts
    743
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Keith,

    Welcome to the forum. Lots of great info and people here. Take the diagnosis of limited or localized very seriously. I've "lived"with limited Wegs for many years with no treatment. Sadly I'm in a crisis now. Don't let the docs put you off, be aggressive with your own care . Best advice I can give along with finding a doc that specializes in Wegs. Keep us posted and good luck.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  7. #7
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,732
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Keith,

    Welcome to one of the best places to get all of your questions answered.

    All of the amazing people about have given the best advice - what more could one want


    Take care - and as always ..........
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  8. #8
    Join Date
    Oct 2013
    Location
    Mass
    Posts
    69
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    hi keith sorry you are feeling bad. in my case i was given prednisone while undiagnosed and helped greatly w inflammation. nothing has helped my ears and nose yet....
    i haven't seen anywhere a direct correlation btw sugar and flare ups but i had to stop drinking soda because i really do feel better when i cut back on sugar intake.
    Smile, breathe and go slowly. Because of your smile, you make life more beautiful. Thich Nhat Hahn

    dxn 11/13

  9. #9
    Join Date
    Nov 2013
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Well, we have decided to start treatment based upon the ANCA data. My rheumatologist seems knowledgeable with WG. Prednisone, methotrexate and folic acid to counter the side effects for the next six weeks. I am looking forward to feeling better soon. He said my ANCA scores may not come down or flip to negative, even with remission. Is this typical or do you just stop taking the meds after you have been feeling better for a while (how do you know when the disease is in remission)? Thanks to all on this forum for the valuable knowledge and insight.

    Keith

  10. #10
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,983
    Post Thanks / Like
    Mentioned
    19 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm glad you are getting treated, Keith. MTX is not one of the strongest drugs but does work and may be just fine for you; it has done well by many on here with mainly sinus involvement. If you start to show improvement you will know it is working and I'd guess that means you do have WG despite the lack of conclusive evidence.

    It's hard to say when you will know you are in remission, as it is a bit of a subjective term. It may be a medicated remission, where your symptoms are under control and you feel pretty well back to normal, but you are still taking the meds, probably at a reduced level. Or it may mean you have suppressed the disease in your body to where you don't even need meds at all and can completely stop them, which you wouldn't know unless you tried it and the symptoms didn't return. I think I might be close to a medicated remission and am on fairly low doses of MTX and prednisone. If I wanted to try stopping the meds altogether, I'd have to take some time to taper the prednisone down to zero, which can be tricky, as you can't just stop it. The MTX I could probably just stop or taper the dose. But I'm pretty sure that at this point, without meds, I would not be able to maintain a remission, and the symptoms would return as a flare. I think there are some on here in drug-free remission, or who were for many years until they eventually flared, but I don't think the number is high. In any case, you should start feeling a lot better after a few weeks of MTX, and since your case seems light, you might even go into remission before long. I had a more severe case, although less severe than some, and had to be on CTX, a stronger drug, for a few months before switching to MTX. I am now doing better than I was at the time I switched, I think.
    Anne, dx'ed April 2011

Page 1 of 2 12 LastLast

Tags for this Thread

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
  •