User Tag List

Likes Likes:  0
Page 1 of 3 123 LastLast
Results 1 to 10 of 21

Thread: Introduction

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

    Default Introduction

    Hello all, I'm new here! My name is Chris and I live in Salt Lake City, Utah.

    Short wegner's bio:

    I've had a long relationship with polyangiitis-with-whatever-this-disease-is-called, but I wasn't diagnosed until Dec of 09. I went into the ER on Christmas day in 2009 thinking I probably had swine flu or pneumonia, but nothing they were doing helped at all. I was getting worse every hour. After a few days I was pretty sure I wasn't going to make it out of there. Luckily after about 5 days sliding downhill, a Rheumy walked into my room and said, "I treat weird diseases that are hard to diagnose."

    "You're going to love me." I responded.

    He took me off of the IV antibiotics, replaced it with 1000mg of Solumedrol, and I've been a weggie ever since. I was 30 at the time.

    I have been trying to force remission ever since with mixed success. I've been on 2 rounds of Rituxan, lots of Predisone (less the many here, thank goodness), Cellcept (briefly, slept the whole time), Immuran, Immuran/Allopurinol cocktail, and Methotrexate. Right now I'm riding a wave of Rituxan and my goal is to get off of the meds all together (don't tell my doctors). Also a really fun (leaky) lung biopsy and sinus surgery in there. Exciting 3 years!

    I have had involvement in eyes, skin, lungs, kidneys and sinuses. Sinuses are by far most affected, and the only current area affected. I have a perforation in my septum about the size of dime.

    I think the thing that drew me here to the board was when I realized that an end to this isn't a few months around the corner. I think I just barely accepted that fact. I always kind of expected that I would be able to force remission, and then go back to a normal life, but healthier without any of the Wegener's symptoms. I thought I was there about 10 months after being diagnosed, but quickly had some brutal times in the nose. Now I'm doing much better but my doc is very clear that he doesn't see a future without major meds for me. I HATE the medicine! Granted it keeps me above ground, but I'm more interested in thriving than surviving.

    So I found all you guys to share who the best doctors are, what are the best books to read, and what treatments work for this rare disease that no one really understands.

    Right now I'm really into the idea of trying to treat the disease with a healthy diet, exercise, meditation, and mindfulness, so I'm going to explore that and if anyone is interested I'll share results along the way.

    2013 is going to be the year I kicked this disease in the trash.

    Thanks for reading, looking forward to getting to know the community.
    Last edited by ChrisV; 01-08-2013 at 05:44 PM.

  2. #2
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome ChrisV, glad you are here.

    Most people can relate to your story and I like the idea that 2013 is the year to kick it to the trash

    When I was first diagnosed in 2010, I told everyone that I would be fine and off all medications by 2011.....give me a couple of months and I'll beat this thing.
    Well I'm still trying to beat it and just now starting to reduce the pred from 5mg to 2.5mg

    On another thread I said that 2013 was when all of us become pain free and none of us will be in hospital this year.....that is still the plan

    Take care and remember to......
    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

  3. #3
    Join Date
    Jan 2009
    Location
    Essex, England
    Posts
    611
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Chris,

    Feel your pain and frustartion but like your positive comment " wanna be thriving not just surviving"

    Like you I thought I would get back to a normal life and set myself targets to achieve, which I did; however the roller coaster keeps rolling which at least makes you appreciate the high points!!

    All the very best and keep us posted.

  4. #4
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the little forum that could...or at least really wants to ChrisV. Lots of knowlege, experience, and help on here from those who know! LOL! I certainly understand your frustration...seems like you are a bit behind in dealing with WG due to not being diagnosed early...that's OK, some never get there, and love your attitude...but WG doesn't go away...maybe YOU could be the first! Anyway, get used to the drugs, the rollercoaster (price of the ticket was cheap, eh?), the general 'difference' even on good days that you experience. Basically, you may kick all you want, but until the ubiquitous 'they' get a drug or procedure on the market that can go right to the heart of this disease, your kicking will be just good exercise...but that's good too! The best to you, keep asking questions, fighting back, and most of all, remember that you really are sick, but you can deal with it...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  5. #5
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi, Chris,

    Welcome to this great forum, and I hope we hear a lot more from you. Seeing that you live in Salt Lake City, you are lucky, because that is the location of one of the few vasculitis specialist centers in the western US. Several of us have been to see Dr. Koening there at the U. of Utah center. I'm not one of them, yet, anyway, as I live in western Washington state and it is too much of a trip for me at this point. Keep us posted on how it goes for you!
    Anne, dx'ed April 2011

  6. #6
    Join Date
    Jul 2010
    Location
    Blacklick, Oh
    Posts
    1,399
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the Forum Chris!
    ~ Bob

  7. #7
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Chris and unfortunately welcome !! I'm alot like you ,I don't due these drugs well that's why so far ( I go back to the Cleveland Clinic on Mon. ) I am only on 5 mg. pred. But thank God all my bloodwork and test are coming back good,except for the endoscopy I just had..the pred seems to be messing up my esophogus and lining in my stomach. So I am going to see again if he will start reducing it,but he keeps saying that is the only thing keeping me in remission.I am also trying to live healthier,doing yoga,watching what I eat, eating alot more fresh fruits and veggies and certain teas.I too plan on kicking this disease in the ass and not by taking all the drugs they keep pushing on me. If it were up to him( my reumy ) I would either be on cellcept,imuran,bactrim or another round of rtx and I said for what everything keeps coming back good if things change we'll go from there but I'm not going to be a guinny pig to see if this works if I fell fine.So keep us posted on how u are doing.
    Life isn't about how you survive the storm, but how to dance in the rain !

  8. #8
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Debra C View Post
    ..the pred seems to be messing up my esophogus and lining in my stomach. So I am going to see again if he will start reducing it,but he keeps saying that is the only thing keeping me in remission.
    Good on the 'healthy' Deb...it's not easy doing that consistently. I'm still on pred (down to 4mg/day!) and still have esophogeal stuff such as 'irritated' non-productive coughing for no reason & my stomach is upset most days. But, rather than thinking reducing at this point as your doc advised against...the same doc should also be providing 'counter active' drugs to help the stomach at least. I'm on Protonix...stopped it once, haven't done that again while still on pred! Seems not much can be done for cough cept keeping it soothed. Something to think about if you haven't done so already...feel better!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  9. #9
    Join Date
    Apr 2011
    Posts
    244
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Debra, Welcome to the forum & I hope your wish for a healthy 2013 comes true!!

  10. #10
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hey Don...are u on anything else besides the pred now ?? I see the doc that did the endo tomorrow, he did prescribe carafate for me to take 4 times a day which coates your stomach..it does help alot BUT I have only been taking it twice a day so far bacause the timing is bad. Can't eat 1 hr before or 2 -3 hours after and can't take any other pills for a least an hour after..so I have to work on the timing.I am also taking Pepcid AC but he said he wants me to be on something else..I'll see tomorrow.
    Life isn't about how you survive the storm, but how to dance in the rain !

Page 1 of 3 123 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
  •