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Thread: What is remission?

  1. #21
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    Bloom, it sounds like your docs are on the right track, getting a biopsy and a CT scan, but I'm afraid you aren't getting enough treatment and they sound too hesitant and tentative about what it will be. I agree with Pete that, even though they will be deciding on an immunosuppressant soon, you should already be on a lot more than 20mg. prednisone, considering your symptoms and that they think it is WG. 60mg. would be typical to get you through the period of no additional meds, and continuing with the start of treatment they decide on. Then it can be gradually reduced over time as you show improvement. Coughing up blood is serious, and I don't think that methotrexate is often considered strong enough for that situation. I would expect CTX or RTX, to start with, and maybe a change to MTX later. CTX worked very well on my lung issues. RTX is preferred these days but may take a little longer to work. One or both may be used in treatment. I'm no doctor but am going on all the many cases I've read about on this forum. Do consider the lists of recommended specialists here: VF Medical Consultants , either to see in person or to have your docs consult with. Also look at this list: http://www.vasculitispan.org/united-states for lists of docs by state recommended by patients even if not known by the VF as experts. If you are not in the US, you may navigate to other pages listing docs elsewhere. Best of luck to you, and let us know what your docs decide.
    Last edited by annekat; 08-13-2015 at 01:08 AM.
    Anne, dx'ed April 2011

  2. #22
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    To Assess Wegeners Disease Activity: Here is a link to the BVAS / GPA Scale

    They assess disease activity as: Severe, Limited, Persistent and Remission.
    I think the lung bleed may be severe. I take counteractive meds to deal w/ the pred. I tried it w/out the pred (at a therapeutic dose >40mg) and it got ugly, even w/ rituxan. I doubt I would survive on sub therapeutic pred doses during flares. Fludrocortisone is being patented now for wegs as an better, less damaging alternative to prednisone but theres no info on it yet...
    BIRMINGHAM VASCULITIS ACTIVITY SCORE FOR GRANULOMATOSIS WITH POLYANGIITIS (BVAS/GPA)

    • Several vasculitis activity indices have been developed for use with multiple forms of systemicvasculitis6-8
    • In contrast, several researchers refined and validated the BVAS as a disease-specific activity index for GPA8
      • Deletes features from BVAS unlikely to occur in GPA
      • Categorized into 9 groups by organ system
      • Places higher weight on 15 major items considered threats to life or organ function
      • Range 0–68

    • BVAS/GPA correlates well with the physician’s global assessment of disease activity, is sensitive to change, and has good inter- and intraobserver reliability8
      • Includes determination of disease status
        • Severe disease/flare
        • Limited disease/flare
        • Persistent disease
        • Remission

    BVAS/GPA SCORING9

    • The BVAS/GPA score assesses disease activity at a given time point as the sum of individual organ system manifestations, defined by a list of 34 weighted items, caused by active disease, with respect to whether symptoms are new, worse, or persistent
    • For the assessment, each of 34 items is categorized as either major or minor, depending on immediate threat to life or organ, with major items given a weight of 3 and minor items a weight of 1
    • The maximum combined score of the BVAS/GPA is 68

    Vasculitis Damage & Activity Indices | VDI, AVID, & BVAS/GPA
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

  3. #23
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    Every case is different. I have yet to formulate a set of principles for what remission is. You have to be a very observant scientist; in the strictest sense of the word. Observing bad signs is always easier than good signs. I particularly pay attention to pains in my body or hearing and visual disturbances. The thing about remission is that it can end at any time. I don't know about anybody else but it's a fruitless cause to try to decide when you are in remission. It's an incurable disease. We have it for life.

  4. #24
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    Thank you. This is very nice!

  5. #25
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    Default Wegeners Scale to test for Remission

    This is PDF of the BVAS Wegeners Scale to see if the disease is in remission or where it's at.

    It was updated in 2014 so I believe it's the most up to date one being used currently.

    BVAS WEGENERS SCALE attached.

    I've read that this scale is used to determine remission when conducting studies on wegeners, such as when Rituxan was tested.
    Attached Files Attached Files
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

  6. #26
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    Quote Originally Posted by Green Grass & High Tides View Post
    This is PDF of the BVAS Wegeners Scale to see if the disease is in remission or where it's at.
    That's cool, you're just full of good stuff.

    Thanks
    Gary

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