User Tag List

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

Thread: Greetings!

  1. #1
    Join Date
    Apr 2011
    Posts
    240
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Cool Greetings!

    Greetings Fellow Weggies,

    I've been lurking here and decided it's about time I introduced myself. I'm from Suffolk County NY.

    I was diagnosed with limited GPA in August 2007 after 3mo of treatment with every antibiotic known for a sinus condition. I also had bone & joint pain, hearing & eye involvement. (don't you just love the limited part, I was falling apart) I was treated with Mtx & pred.I did rather well & by March of 2008 I was off pred.

    In May of 09 I had unrelated surgery to remove a parotid tumor. The tumor was benign, but the surgeon saw a reactive lymph node & took a biopsy. It was positive for lymphoma. After a bone biopsy, endoscopy, colonoscopy, assorted scans, blood tests & visits to Memorial Sloane Kettering, I got a final diagnosis of Chronic Lymphocitic leukemia or CLL. Sounds worse than it is. My particular form is very mild & requires no treatment & I'm told I'll probably die of something else & if it wasn't for the surgery I'd probably never have been diagnosed. I see an oncologist every 2 months just to check everything out. (But, fact is CLL is the result of a messed up immune system.)

    In August 2009, the Wegs came back. I was back on MTX & Pred. (Approved by the oncologists) I was on 60mg pred & 25 mg MTX in April 2010 when my kidneys became involved. After a week in the hospital for a kidney biopsy &treatment of 500 mg solumedrol a day, I went home to start treatment with cytoxin. A few weeks later I was back in the hospital with a DVT & pulmonary embolism. I had 6mo of ctx & slowly tapered the pred till I was off of it in June 2011.

    Within a few weeks of finishing pred I relapsed again. This time we used Rituxan, 4 treatments, the last on 9/6/11. I saw a wegs specialist because my rheumy & kidney docs were not in sync about followup treatments. Because of the CLL we aren't doing anything. CLL is the sleeping giant in the room & nobody wants to wake him up. The pred is down to 5 mg a day & will probably stay that way since I seem to flare every time I go off the stuff. If I flare again I will probably go on a RTX maintenance schedule. RTX is safe to use with CLL. A lot of the others aren't.

    Basically, for the last 14 months I've been OK & keeping my fingers crossed that things stay the way they are.

    Thanks to everyone here for all your help and info. Up to now I've been on the taking end & I hope I'll be able to give back in the future.

    Be well,
    Jean Marie

  2. #2
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,764
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by JeanMarie View Post
    Thanks to everyone here for all your help and info. Up to now I've been on the taking end & I hope I'll be able to give back in the future.
    Well, you're officially welcome to the 'club' you lurker, you! LOL! Glad you've been on and getting something out of our sometimes banal chitchat! Lots of good people, knowledgeable and experienced on here. Sounds as if you have a lot to add for people to think about...such is WG!!! Glad you're in control right now...I think that's about as good as it gets with this disease...while I've heard of full and complete remission, I've never talked with someone who has achieved that...I think that would be called a cure...doesn't/hasn't happened in WG to my knowledge yet!! The best to you JeanMarie...hope to hear more from you and your experiences with WG!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  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, JeanMarie! Hope we can continue to help one another and keep our spirits lifted.
    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
    Jul 2010
    Location
    see map location
    Posts
    4,127
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to our forum. If you have been following us a long time, you know this is great source of info and support.

    Your history sounds rather typical unfortunately in many respects. Trouble getting diagnosed correctly despite many symptoms, having additional problems or complications requiring additional treatment, some success and then some flares, and needing to stay on some prednisone to maintain drug induced remission. The drugs you have used are pretty typical for most of us and unfortunately the risks of the side effects too but it sounds like you have finally reached a good spot that hopefully will last a long time. Hopefully any future flares will be rather mild and more easily treated.

    As your history confirms the term "limited" is usually regarded by the experts as pretty worthless and it is likely it will be replaced by describing the organs involved eg GPA with sinus involvement and maybe a modifier of severity (mild, moderate, severe to describe degree of treatment needed to contain it).

    Yep, you sound like one of us and should post a lot to raise your voice in the choir of GPA members.

  5. #5
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,912
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Jean Marie! I lurked for awhile, too, before posting. Guess I was afraid of opening a can of worms. But then, Wegener's IS a can of worms, isn't it? LOL. Laughing at myself.

    I can't add much to the comments of others above, except that just when your case was sounding SO familiar, with the antibiotic resistant sinus infections, joint pain, hearing problems...... your story started taking twists and turns! I had a swollen parotid gland right around diagnosis, which was biopsied, etc. but not found to indicate anything serious except maybe WG, and I guess it wasn't a tumor.... I have read on here somewhere that parotid gland swelling isn't unheard of with WG. But yours led to the discovery of something worse, but not as bad as it could be, and then you got kidney involvement. I haven't had that, but did get lung involvement. If we look at various cases on here, no two will be alike, it seems. I hope all your issues continue to be manageable, and like you say, things stay the way they are.

    Anyway, I'm glad you are here and am looking forward to more posts from you!
    Anne, dx'ed April 2011

  6. #6
    Join Date
    Oct 2010
    Location
    The Netherlands
    Posts
    479
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by JeanMarie View Post
    CLL is the sleeping giant in the room & nobody wants to wake him up.
    Jean Marie
    Wow, Jean-Marie! You sure know how to describe a complicated history, and come down to the essence of things!
    On this forum the expression 'Wegs dog' is often used to describe the unpleasant disease we all share.
    The 'Wegs dog that is sleeping, and that you don't want to wake up', to be more specific.
    Maybe you read that already while lurking ;-)

    You got another phenomenon that you don't want to be awake.
    To be honest, I never heard of CLL before...

    I hope you will continue to be doing OK, and if not, that you will be finding the support you need here!
    Last edited by [email protected]; 11-26-2012 at 10:57 PM.
    Living with WG/GPA since june 2010...

  7. #7
    Join Date
    Jan 2010
    Location
    Yuma, Arizona 85364
    Posts
    952
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to our group. I am glad that you have decided to jump in. I hung out a bit before I decided to join, I wanted to make sure that the support group I selected was credible and I can tell you that I am sure that my life has been saved more than once due to the advice I have relieved here. It is also a safe place to vent even when you might not make sense to your loved ones we "get it". This helps you to help your friends and family "get it". At any rate...WELCOME.

  8. #8
    Join Date
    Apr 2011
    Posts
    240
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks everyone for your generous welcomes!

    Don, I once met a GPA patient who had one really bad episode was treated & never relapsed! I don't even remember her name, it was at the beginning of my own journey & she came to a support meeting. She said she goes to meetings once in awhile just to let folks know its possible. I remember she had the full deal, even had subglottic stenosis surgery. I guess she's gone on with her life because I never saw her again. There are probably others-maybe they just try to forget the whole thing. Just my humple opinion.

    Jean Marie

  9. #9
    Join Date
    Jun 2012
    Location
    New Brunswick, Canada
    Posts
    377
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome to the "club!" Although I am sure this is one club we would all rather not be a part of! However there is a great group of people here.

    I don't know a whole lot like some on here as I am young and stubborn, as well as just diagnosed in June.

    However I do know a little ...

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

    Default

    Welcome JeanMarie. You've sure been through a lot in a short time. It sounds like you're responding well to treatment at least. I'm glad to know you have a Wegs specialist on board. Kudos for coming out of lurker status!

Page 1 of 2 12 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
  •