User Tag List

Likes Likes:  0
Results 1 to 10 of 17

Thread: Your Experience with Wegener's

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Nov 2012
    Posts
    4
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Your Experience with Wegener's

    Hi everyone,

    I'm posting this in the hopes that a few of you might be interested in walking me through your experience with Wegener's.
    Last edited by epavelle; 12-11-2012 at 04:35 AM.

  2. #2
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    Any of the centers that are recognized as having expertise in treating GPA could give you this type of information if you can convince them you are a legitimate researcher as many are already involved in doing research to try determine what treatment is most effective for us. Many of us have already shared on here many details of our GPA ordeals.

    What is the proposed treatment regime you are trying to sell and why do you think it might be more effective than current procedures?

    Many of us are already participants in various GPA research studies that are currently underway.
    Last edited by drz; 12-03-2012 at 04:00 AM.

  3. #3
    Join Date
    Apr 2011
    Posts
    244
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hmmmm--maybe you should contact the vasulitis foundation.

  4. #4
    Join Date
    Oct 2010
    Location
    The Netherlands
    Posts
    548
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by drz View Post
    Many of us have already shared on here many details of our GPA ordeals.

    What is the proposed treatment regime you are trying to sell and why do you think it might be more effective than current procedures?
    Indeed many stories can already be found on this forum. If you are a research analist you can find a lot of material for a study with which you can make a case.

    I 'm also curious what the proposed treatment regime is.
    Maybe you can tell us something more about that!
    Living with WG/GPA since june 2010...

  5. #5
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    Any product that is as effective as current meds and has less side effects and is less toxic would be warmly received. The catch is demonstrating that it is just as effective as Rituximab. Are there any research trials underway now to test its effectiveness with GPA or related disorders? Has it been used for this purpose any where in the world?

    How long would it need to be given every two weeks? And then how does total cost stack up against current RTX schedules when RTX is given 2x or 4x every six months? Or every year?

    None of the drugs currently used to treat GPA were developed for this specific purpose so using a drug intended for another purpose is standard for us but insurance companies won't cover it until there is enough research to establish that it is a viable treatment option or that all other alternatives have been tried or ruled out for medical reasons. The research centers can tell you better how many people really need some other alternative to RTX or CTX? Generally the more options, the better because we don't all have same symptoms or responses to any given treatment.

  6. #6
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Emily, your efforts are/can be appreciated. But, you have given us, us being WG patients, no credentials other than your word. No reason not to trust you, but then again, no reason to give you info that you have no valid reason (as not stated) to give you personal and painful information other than what we've already chosen to present on here and you are evidently not getting enough info for your purposes from here. WG is a very personal disease, in case you haven't noticed...note that in your folder of research! Thus, though we seem to be open and forthcoming on here, you haven't heard the half of it...so we understand a/your desire to know more about WG...but not at our exposure risks, personal or otherwise. That is why you're getting some resistance or questioning. Maybe someone, in personal messaging, is willing to help you out...that's nice, but not helpful at this time other than for personal release...again, you have given us no professional or legitimate reason to cooperate...WG is bad enough without people asking questions all the time.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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

    Default

    Wow! MUCH better!! LOL! And a name too...thanks. I'll go look at it. And, I, perhaps 'we', appreciate your interest also.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  8. #8
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

  9. #9
    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 epavelle View Post
    I'm not sure how to prove my credentials, but I am an analyst at the Beacon Group, which is a research firm in Portland, Maine.
    Not to be tooooo curmudgeonly, but if you don't know HOW to prove your credentials, then who can? Hmmmm? And, being an analyst at a research for profit group, always sets me off, but that's MY problem. I want help and will do much to further research into WG if that's what it takes...your firm appears to do 'other' things besides researching for the improvement of the victims. Sighs....seems extraordinarily common these days...what happened to helping victims first and making profits later?????? GO DRZ...way to get to the point!!! LOL!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  10. #10
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    No confusion...just wanted you to say what you might have said in the first place in order to get this forum's attention, and perhaps input, for your research. That being said, I'm sure there are those on here who may help out, especially cuz of the one statement: "our clients believes they may have a treatment option." While that's bad English (LMAO!), that works for many on here...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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
  •