User Tag List

Likes Likes:  0
Page 1 of 3 123 LastLast
Results 1 to 10 of 23

Thread: 25 years old, diagnosed with GPA

  1. #1
    Join Date
    Jun 2016
    Location
    New England
    Posts
    16
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default 25 years old, diagnosed with GPA

    i have been struggling with years with just a feeling of unwell. i've been given pretty much every run around until i finally got a thoracic surgeon to biopsy my lung. the basis for the biopsy was to get a piece of a hilar mass and see why the base of my lungs appeared to be white, or collapsed on film.

    shortly after the biopsy, i was told it was vasculitis. the pulmonary doctor i was seeing sent me to a rhuemtologist who was able to point at a few symptoms that lead to GPA. i have been on treatment for about 3 months now, approaching my fourth. my white blood cells have improved, my platelets have not. my pain has gotten worse.

    i am struggling with the decision to continue treatment because the amount of pain i am in on a regular basis is just unmanageable. with the use of narcotics, i am only a shell of myself. i know that leaving this untreated will ultimately cause organ failure and i will die. but truthfully, i am in so much pain that i dont know what would be better.


    i am so alone in all of this. i left my home state of Missouri, and moved to New Hampshire. i was also diagnosed with histoplasmosis from living in the midwest for.. 22 years.

  2. #2
    Join Date
    Jun 2016
    Location
    south wales uk
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Please don't give up, I know your feelings so unwell at the moment but you will feel better soon.
    My son as got Wegener's he was 13 when he first became ill and 14 when he was diagnosed. He lost his hearing in both ears and now wears hearing aids. He also went though months and months of treatment, having chemotherapy, blood transfusion and all the different tables and drops for his eyes. He is now 18 and been in remission for 6 months.
    So please keep up with any treatment they give you, because you will feel better even if you don't think so yet.
    Jeanette

  3. #3
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,159
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the Forum, Baby.

    What is your treatment regimen? You should be on an immunosuppressant (rituximab, cyclophosphamide,etc.), an anti-inflammatory (prednisone), and perhaps bactrim. You should be able to get to a Vasculitis specialist in Boston. There's a list of specialists on the Vasculitis Foundation's website.

    Don't give up. Get the help you need right away.
    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
    Mar 2013
    Location
    Santa Rosa, CA
    Posts
    638
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm also curious what your treatment plan is.

    My main problems with Weg's is joint pain (oh my god, it's terrible!!!! I can't sleep at night!) and feeling sick and run down all the time. My sinuses get enraged!! Bloody noses, etc. It wasn't enough for doctors to give me a diagnosis. I even had a lung biopsy and the pulmonologist that read the report from the pathologist MISSED the "granuloma" mentioned. I finally found an AMAZING rheumatologist who contacted the pathologist who wrote the report and got the second opinion of two other pathologists at Stanford and confirmed the diagnosis.
    The first types of medications didn't work for me. None of the above symptoms ever lessened. The joint pain and feeling sick is the worst. I am in agony a lot. So, now I have switched to a chemotherapy of Rituxan and while I am struggling with some side effects from that, I already feel better in my joints. It's not 100% but it's better than it has been 22 days after my first infusion.

    There is relief. But, it takes a bit of fighting with the doctors. Speak to them, tell them it's not working and BE INSISTENT.

    There are people here who have been in the hospital on their death bed and been brought back to live decent lives. There is such thing as a 'new normal'. Your life may not go exactly back to being perfectly normal but there is a way to live happily with this disease. I've seen it so much on this forum.

    Hang in there. It DOES get better.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  5. #5
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi & welcome to the forum.
    I am so sorry for your pains and for being so lonely in this tough battle.
    You need to have a wg expert to treat you.
    Like the others I wonder what treatment are you getting now. Maybe you can get another which will eventually help you. I tried 3 meds which didnt work for me. Only Rituximab works, and in an amazing way. Docs dont give it so fast because it is very expensive. Also it sometimes takes time until is start to work. Although 3 months is about the time.
    As for being on narcotics: it can cause depression of the breathing. Should be off it but also reducing it must be very gradual and careful. Hang in there. You are not alone anymore. You have us. Please let us know what meds are you on, if you have a decent wg doc and how are you doing so far.
    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.

  6. #6
    Join Date
    Jun 2016
    Location
    New England
    Posts
    16
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I am currently on 100mg/day of Imuran. I have been struggling with GI issues since starting the Imuran. I am also being treated for histoplasmosis with 400mg/day of flouconazol. I was on intraconazole but had a very bad reaction to it. The rheumatologist I am seeing is not a stranger to GPA.


    a lot of the problem, in my non medical opinion, is that when I was diagnosed the most recent blood work was from a month prior when I had 3 chest tubes and had life support called on me twice and my blood indicated with high wbc and platelets that the condition was worse. With follow up blood work it was noted to be lower and not as alarming. I don't think they even know what's wrong but have put me in this catagory based on lungs, sinuses, and the "saddle nose" feature.

    this last weekend, when I posted this, I was in such pain I was a different person. Urgent care, local hospital, and pcp did a urinalysis, nothing noteworthy. Urgent care and my pcp think its blood flow problems to my kidney, as a uti and kidney infection aren't debilitating pain. The local hospital said its all in my head. Went to the hospital where I am being treated for gpa and they threw 2 antibiotics at me and said uti and kidney infection. I took the results to my pcp and she said there are no indications of either and she doesn't understand.

  7. #7
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,127
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Get yourself to some center with experience in diagnosing and treating GPA if you want to get better. You need correct and appropriate treatment to improve.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #8
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default

    Imuran caused me also GI issues: I vommitted like hell and had crazy diarhea. I felt like being poisened. I stopped it after a month or so. I got 100mg as well. if you are flaring then imuran is not strong enough to handle a flare. Needs ctx or rtx.
    Why did you have 3 chest tubes ?
    Are you getting prednizone ?
    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.

  9. #9
    Join Date
    Jun 2016
    Location
    New England
    Posts
    16
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    February I had a wedge biopsy of my left lung, instead of healing, I had about 4 pints of fluid building up on my lung. The first tube was broken, second placed wrong and the third finally drained the fluid.

    i am not on prednisone.

  10. #10
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,046
    Post Thanks / Like
    Mentioned
    22 Post(s)
    Tagged
    0 Thread(s)

    Default

    Sorry for the mess with the chest tubes. Its an agony... my beautiful Phil was on 8 chest tubes.
    Thanks God you are no longer on them.
    I wonder why they didnt give you pred. But since I am "pro-pred", I wonder what others around think and if they think that you need it...
    Anyway, sounds like you need some decent wg expert.....hang in there. The beginning is the most rough. It should become easier.
    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 1 of 3 123 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
  •